00:00 Hello everyone and welcome to SRNA “Ask The Expert” Podcast Series. Today’s podcast is entitled “How to manage and cope with grief”. My name is GG deFiebre and I will be moderating this podcast. SRNA is a non-profit focused on support, education and research of rare neuroimmune disorders. You can learn more about us on our website at wearesrna.org. This podcast is being recorded and will be made available on SRNA website for download via iTunes. During the call, if you have any additional questions you can send a message through the chat option available with GoToWebinar. For today’s podcast we are pleased to be joined by Sandra King and Katherine Treadaway. Sandra King is a licensed clinical social worker in the Neurology Department at UT Southwestern Medical Center. She graduated from Stephen F. Austin State University with a Bachelor of Fine Arts degree in Art Education, with a minor in English, and received her Master of Science in Social Work degree in 2006 from the University of Texas at Arlington. Sandra received her license in Masters of Social Work in 2006, and her license in Clinical Social Work in 2011. In her position at UT Southwestern, Sandra provides emotional support and counseling with patients.

01:18 She also composes appeal letters and letters of medical necessity, advocates for patients with their insurance companies, and makes referrals to various agencies and other professionals. Katherine Treadaway received her bachelor’s degree in sociology and Master of Social Work at Louisiana State University. She started her career at the Baton Rouge General Medical Center on their general medicine floor gaining social work experience on all the units there including telemetry, burn, oncology, OB-GYN, and the ER. She received her board certification in 1998 from the Louisiana State Board of Board Certified Social Work Examiners.

01:55 When Katherine first moved to Dallas she worked as a case manager at Presbyterian Hospital of Dallas on their physical rehabilitation unit for orthopedic and neurologic patients. Katherine has been at the Multiple Sclerosis Program at UT Southwestern since September 2002. She works with a dynamic multidisciplinary team in the MS Clinic and the Pediatric Demyelinating Disease clinic participating in research and patient care. She assists patients by serving as their advocate, locating resources, providing counseling, support and information, and arranging home and outpatient care. She also assisted in the development of the Total Life Care Clinic, a clinic within the MS Clinic, as well as participates in this weekly multidisciplinary clinic for at-risk patients. Welcome and thank you both for joining us today.

02:44 Thank you thank you.

02:47 I’m Sandra and I’m going to start out by giving some definitions for some things that relate to this podcast. What is grief and the types of losses. Grief is a personal experience and it’s a response to a loss. And mourning is a post loss experience. Bereavement is the state of being separated from someone or something. Losses can be many things. Can be the death of a loved one, the loss of a job or a breakup or divorce, a career change or a life change that you didn’t expect or you weren’t planning for such as something due to a chronic illness. Losses the death of a loved one, job loss of function mobility, loss of relationships, loss of independence, of a role, loss of intimacy, all of these are losses and they may diminish self-esteem and fuel depression and anxiety which comes with grief.

04:11 This is Katherine. I was going to go over some principles about grief again like Sandra said it is a natural response to a loss. And it’s universal it’s experienced across everybody regardless of their gender or their age even though it’s universal though it is very unique. We all grieve differently in our own way acute grief is typically limited Yeah grief can remain especially when it’s a loss, a chronic loss. And there’s really no time frame for grieving. We all agree that our own speed and each of those losses maybe grieve differently and we also we grieve better together.

04:59 And it’s OK to express our grief to others. It’s really part of healing as expressing our grief and it is a complicated process. And what we do know is there is really no one way to do it. Clearly

05:15 the impact of grief is mainly seen on an emotional level with an overwhelming sense of sadness feeling that a part of ourselves has been lost. This would especially be part of a chronic illness. There’s depression wanting to withdraw from others possibly despair. Yearning for the previous life or condition. There’s fear there’s anxiety anger there may be a sense of injustice or envy in others that don’t are not being perceived to be having been going through this. There may be guilt over things that you wish you had done or not done. There may be relief especially if the person that has passed away if that’s the situation had been suffering shock and disbelief can happen. If you’re unable to take in what had happened. Feelings of numbness that can often accompany if there was a trauma or a traumatic event that led to the loss especially in the case of losing someone when it wasn’t expected or in a way that is traumatic and there’s several other ways that grief impacts us and they can impact us physically as well which could be crying and that could be at unexpected times when you least expect it.

07:04 You know the tears can get out but remember just because someone is not crying doesn’t mean that someone’s not in pain. Again we all express differently but other physical signs could be frequent sighing,

07:18 headaches, decreased appetite trouble sleeping and people just feel really heavy. May have aches and pains and you know with these things of not eating and not sleeping well can come along just increased illness and a weakened immune system. And people may feel tightness in their throat.

07:48 Just feel absolutely exhausted. And someday you’ll need to feel really restless. You know they can’t focus on what they want to do. There’s also cognitive impacts and people may just have a sense of thinking about what’s going on. Apathy or disinterest certainly trouble concentrating on being maybe ruminating on what if scenarios replaying images of loss being disorganized impaired judgment infusion even in sudden mood changes that might even surprise yourself. And you know with all that cognitive impact you know if you are actively grieving it’s not a good time to make any major life decision. You know if you’re thinking about moving or changing jobs or something I put that on hold until you are feeling better.

08:53 One of the things that I’ve had to deal with when doing counseling sessions both with people with a chronic condition and all those that have experienced a death of a loved one is the spiritual impact. Not everyone is religious. Not everyone is associated with a denomination or a church or a belief system. So when I’m working with them I am going to be I’m going to start at the place where they are if they I sometimes ask at some point during the session if they are spiritual or religious or if they’re associated with any kind of organized religion or if I just have their own set of beliefs and I will mention that or use that in the therapy or when I’m talking to them about ways that they can use their belief system to help them through some of these impacts that they’re having emotionally if they’re atheist or don’t particularly have any kind of spiritual belief.

10:17 I’m not going to judge them and I’m not going to suggest that they use the power of prayer or anything like that. I’m going to I’m going to be where they are spiritually and go from that point. Or use if it if it is a part of their life and if not then talk about other ways to to heal through grief therapy there there is a tendency for people to isolate socially and detach. They may even form unconventional relationships while they’re in the throes of grief or after they’re they’ve been given a diagnosis of a chronic illness. There may be some family strain because of what changes have occurred in this person’s behavior or response to the family. Emotionally those are things to be aware of as a part of the grief the reaction to a loss.

11:34 And I just want to add just to reassure people that all these symptoms and common emotions these are all normal and normal reactions to loss and you might feel like you’re going crazy. That you’re not these feelings they’re healthy they’re appropriate and negative emotions are part of the process following any kind of loss or following disability. again this is normal. And I read an article recently and they referred to this quote “limbo state loss” and just describing like living a life of uncertainty you know where you’re just not really sure when the next loss you know you may have kind of come to terms with one loss and then here comes another loss. And I can definitely relate to this just as being the parent of a special needs child so the loss of you know the expectations of what your kids going to do and what they’re going to be like and you’re not having a child that’s going to be able to play soccer, or sing in choir.

12:47 Do any of these activities. And then there’s just things along the way that I feel like has triggered that grief again and this kind of chronic last state you know when seizures started and when getting a feeding tube and things like that can kind of just trigger those feelings again. And it’s just a rollercoaster of emotions. And I think though in many instances individuals and families they may just even lack awareness that they are indeed experiencing grief. Again that these feelings are normal.

13:26 I’m going to talk about stages of grief and these have been written about by various people. One of the major influences in this is Elisabeth Kübler-Ross. She recently she passed away August 24th, 2004 she was a Swiss-American psychiatrist. She was a pioneer in near-death studies and the author of the groundbreaking book on death and dying which was written in 1969 or published in 1969. She first discussed her theory of the five stages of grief denial anger bargaining depression and acceptance as a part of grief. As part of the framework that makes up our learning to live with the one we have lost or that in the case of her illness the loss of our independence or some other loss related to that they are tools to help us frame and identify what we may be feeling but they are not stopped on some linear timeline in grief.

14:44 Not everyone goes through all of them or in a prescribed order. On the Web site grief dot org. David Kessler who wrote another book with Kübler-Ross says this. I was privileged to co-author two books with the legendary Elizabeth Kübler-Ross as well as adapt her well-respected stages of dying. For those in grief as expected the stages would present themselves differently in grief. In our book on grief and grieving we present the adapted stages in the much needed area of grief. The stages have evolved since their introduction and have been very misunderstood over the past four decades. And were never meant to help messy emotions into neat packages. They are responses to laws that many people have. But there is not a typical response to a loss as there is no typical loss. I think these five stages can be used as simply a guide and there there.

16:02 Good to read for someone experiencing a loss to help them understand where they might be at any given moment along in in their in their grief process. Denial is this can’t be happening to me. Anger is why is this happening and who is to blame. Bargaining. Make this not happen. And in return I will fill in the blank depression. I’m too sad to do anything and acceptant. I’m at peace with what happened. If you are experiencing any of these emotions following a loss it may help to know that your reaction is natural and that you’ll heal in time. However not everyone who grieves goes through all these stages and that’s ok. Contrary to popular belief you do not have to go through each stage in order to heal. In fact some people resolve their grief without going through any of these stages.

17:08 And if you do not go through the stages of grief you probably won’t experience them in a neat sequential order so don’t worry about what you should be feeling or which stages you’re supposed to be in Kübler-Ross herself never intended for the stages to be a rigid framework that applies to everyone who mourns in her last book before her death in two thousand four she said our grieving is as individual as our lives.

17:43 And now we’re going to talk about a little bit about managing and coping with grief and I would say first that there really is going to be not one answer for everyone. You know it really needs to be highly individualized for that person who you know is going to offer some suggestions and things that hopefully people you know can pick something out of there for their toolbox to help them. You know we don’t have a choice about illness or someone dying but we can choose how we respond to the situation. And I think sometimes people are faced with illness. They do have an opportunity to really evaluate what’s important to them and make some profound or even small beneficial changes that they wouldn’t have made or done otherwise. And one of the things you might want to look at is how have you coped before.

18:42 How have you gotten through tough and challenging times in the past and maybe just reconnect with some of those activities or things that you did that that helped you to feel better. Certainly need to take care of yourself and your grieving over either death or a loss. You know it’s more important than ever to take care of yourself. Because the stress of a major loss can really deplete your energy and your emotional reserve.

19:12 So I would encourage people to check out this website about self-compassion. Selfcompassion.org and you can take a quiz. Kind of see where you’re at as far as how you’re treating yourself. And Dr. Kristin as she has several exercises on there to help you increase your self-compassion and to be gentle and kind with yourself. And I also would seek out caring people and you may at times of a major loss or a death, you’ll look through your contact list. And you know look at the people who were of people what you would call on and to help you move or you know people that you can really rely on to be there for you. And pick those couple people that you are going to go to and you need to and maybe even block some of the ones that are not supportive are not going to be helpful.

20:12 You really need someone who is not going to be judging you. And that is going to listen to you. And we do grieve better together. And so I would seek out those caring people. Another thing is expressing your feelings in a tangible or creative way. You know we talk about how important it is to express your feelings. One of those ways is by telling your story in just telling your story of what you know what you experience is a very healing and advocating tool. It gives you a chance to process your own emotions or your experiences and it can help fundraising for cures and services. And it can be really profound and powerful and other people you may relate to that story and everyone has a story you could write about your loss in a journal if you’ve lost a loved one you might want to write a letter saying things that you never got to say to that person you could make a scrapbook or a photo album celebrating that person’s life.

21:22 You could get involved in a cause or an organization like SRNA or any of these organizations that might have been important to your loved one you know getting out and doing some of the walks, like SRNA walk or like the MS Society have a huge bike ride that they do every year all over the country. And again you have got to look after your physical health. I know it’s a lot easier said than done but our mind and body are very connected. And when you feel healthy physically you’ll be better able to cope emotionally.

22:04 So try to get enough sleep try to eat good you know and there are even studies to show that people who are eating highly processed Western diet which is like a lot of us that that can contribute to depression. So do your best to just eat fresh foods real foods exercise if you can or just get outside sometimes just reconnecting with nature can kind of reset our mindset.

22:35 You know and getting a little sunshine and stay when you’re grieving for whatever reason and just realize that you’re in a vulnerable place and don’t use alcohol and drugs to numb the pain of grief or just lift your mood temporarily or artificially.

22:57 But don’t beat yourself up about things you. But just be mindful of that.

23:04 And I would say try to maintain your hobbies and interests. There’s a lot of comfort in routine and getting back to activities that bring you joy and connects you to others. So like say with working.

23:17 You know if you’re concerned so it’s going back to work sooner or not going back soon enough just remember it’s so different for all of us and some people may take comfort in going to work and being around people that they really enjoyed being with and being able to focus on something else. You get and don’t want to be at home you’re maybe ruminating or worrying and I just kind of evaluate and reattach yourself to things that you enjoy doing.

23:50 And think about the example that you want to set for others.

23:55 And don’t let anyone tell you how to feel and don’t tell yourself how to feel either. Your grief is your own and no one can tell you when it’s time to move on or get over it. You know just let yourself feel whatever you feel without embarrassment or judgment. It’s OK to be angry to cry or not to cry. It’s all OK just to laugh and find moments of joy do those things.

24:23 And you also I think this is really important. When I talk about that “limbo state loss” and when there’s chronic loss I think it’s really important to implement some kind of relaxation strategies. You can honor your grief journey and nurture yourself and some of those things these mindful based activities like guided imagery and meditation. I mean we know these things improve our health they improve our resilience they can decrease worry and rumination. And there’s a really great app that I recently discovered that you may want to download. It’s called insight timer. And so I haven’t seen anything that cost money, it seems so I’ll be free. And you can pick how many minutes you want to do. They have a lot of healing and recovery type imagery on there that might be something that relaxes you. But again you know nothing just fits everyone perfect.

25:28 Another thing is that personal and individualized rituals are healing. So maybe you know someone has died she might do something maybe you planned something fun on there to do on their birthday like maybe you’re going to go jump out of a plane or you’re going to hike a mountain or go see some special place that you all share together or always wanted to go see or plant a tree or even visit their gravesite or whatever it is. It’s just picking some kind of activity to honor the person they could be found as well. And in our clinic we established as probably 10 years ago we felt like just as the clinic needed some outlet for our grieving for our patients that had died over the year. And we started this event, it’s called “because we remember” and we host it every two years. And we invite the families of the patient that died and as well as all of our team is invited and we get together and we sing and we remember those people and it’s just that kind of healing time for us.

26:51 And not just something else. You know another idea and I would also add one more thing planning ahead for grief triggers like an anniversary or a holiday or some kind of milestone you know and just be heard here or there might be some emotional crisis at that time.

27:09 And if you’re sharing a holiday or event with other relatives you maybe talk to them ahead of time about expectations and agree on strategies on how you’re going to honor that person that you loved.

27:24 I’m going to talk about from the therapist point of view what you might benefit what you might be able to benefit from in grief therapy or any kind of psychotherapy that might help you with your chronic illness or loss of independence or loss of a loved one. I see patients in the MS clinic for therapy. Some of them have transverse myelitis and what you what we see what we do mostly in psychotherapy nowadays it’s called cognitive behavioral therapy and what that is is it using your thoughts to kind of direct your emotional state so that if it becomes negative or depressed or anxious that you can redirect your thoughts so that you don’t feel as depressed or anxious.

28:36 You can get into some emotional traps when you’re grieving or whether it’s grieving the loss of independence because of your condition or from the loss of the actual person in your life. These emotional traps are things like putting yourself down.

28:57 Negative self-talk blaming others for your problems expecting others to understand your problems and to be appropriately empathetic. Being angry about your losses or your illness and withdrawing from social activities or just saying to yourself more so these negative thoughts that are not helpful to you are just the kinds of things that in cognitive behavioral therapy I would say when those thoughts come up when you become aware of one of those thoughts that you stop it and you redirect your thinking to something more positive. Such as. Well I can’t do that anymore but I can do this I can still go out with friends for lunch. I may have to get a ride. Maybe you can’t drive anymore but you can still make arrangements to get yourself somewhere so that you can engage in a social activity or you can invite friends to come to your home.

30:17 Those are examples of a way to rethink your current situation and create what people call now as their new normal grief can be a rollercoaster and instead of a series of stages you might think of it as full of ups and downs highs and lows. And like many roller coasters the ride tends to be rougher in the beginning and the lows may be deeper and longer. The difficult periods should become less intense and shorter as time goes by but it takes time to work through a loss even years after a loss especially at special events such as family wedding or the birth of a child. We may still experience a strong sense of grief and this is from the Hospice Foundation of America.

31:15 As a therapist sometimes I have to tease out what is grief and what is clinical depression and it’s not always easy as they share many of the symptoms but there are ways to tell the difference. Remembering that grief can be a rollercoaster. It involves a wide variety of emotions and a mix of good and bad day even when you’re in the middle of the grieving process. You will still have moments of pleasure or happiness with depression. On the other hand the feeling of emptiness and despair are constant other symptoms that suggest depression rather than just grief include intense pervasive sense of guilt. Thoughts of suicide or preoccupation with dying feelings of hopelessness or worthlessness low speech and body movements inability to function at home work and or school seeing or hearing things that aren’t there and at that point if I if I think that it might be depression then I’m not suggesting that person an anti-depressant or some other or visiting with their psychiatrist to determine what if there is a medication that might be helpful to them.

32:47 Can an anti-depressant help grief? as a general rule. Normal grief does not warrant the use of antidepressants. Well medication may relieve some of the symptoms of grief it cannot treat the cause which is the loss itself. Furthermore by numbing the pain that must be worked through. Eventually antidepressants might delay the mourning process. I would say in addition to that if some people cannot handle crying a lot and if that really impacts their ability to get through the grief process then they may want an anti-depressant to help with that. It doesn’t mean that they’re crazy or that this has to be ongoing or forever but they might need some help with the medication for a short period of time.

33:57 And I just I get a little bit to touch on supporting others who are grieving. And again it’s a kind of a recurring theme in our talk just that it’s really important to feel and express your feelings. And you may decide you do want to seek out a grief support group and I think we have some information. And for a resource for that or just support groups related to the illness. And often people with chronic illness can relate to one another’s experiences even if it is a different diagnosis that I also want to say if you don’t feel connected that’s OK too. You know maybe that’s not what you need at that time and it’s just not the right time for you for that kind of group.

34:40 As nobody knows what you feel. Nobody. It’s shaped by whatever your circumstances are your experiences and just the way that you make meaning out of events in your life. And so if you are helping someone for grieving don’t let fears about saying or doing the wrong things stop you from reaching out. You know some of us can feel really awkward when we’re trying to comfort someone who’s experienced a significant loss. And I would say just be genuine in your communication. You could just say something really simple like you know I don’t know what to say but I just want to know how much I care about you and other things you could offer is like practical support. A lot of times when people are grieving, they really can’t come up with what to tell you to do maybe just say I’m going to go bring you a bag of dog food.

35:37 I remember you told me that the other day it is immensely helpful for them because nobody was thinking about their dog and their dogs needed food and bringing their kids to soccer thing. Again trying to keep people in their routine.

35:53 Let that grieving person know that you’re there to listen to them and listen compassionately you know that bereaved person talk about how their loved one died or even talk about their loss. I read this article the other day it was titled I miss me too.

36:12 And I think sometimes people they just want talk about what they miss about themselves. So just be a compassionate ear accept and acknowledge their feelings and let that person know it’s OK to cry in front of you ever get angry or break down. Don’t try to reason with them over how they should or shouldn’t feel. Again it’s a very unique and you maybe they have some irrationality.

36:43 But what I would say that if you are concerned that someone is beyond one of these emotions and it’s not stopping and it’s worsening and the symptoms are fading that maybe the normal grief has evolved and some are serious problems and this kind of thing Sandra was talking about just to look out for those things so that maybe that person doesn’t realize what’s happening and maybe just making a simple statement like you know I’m really worried about you because I see you’re not sleeping you’re not eating you know can I help you. Let’s look into getting some professional help. And again just acknowledging their feeling offering comfort and reassurance without minimizing the loss.

37:33 I’m going to talk a little bit about hospice. I did work for a hospice company and I’m going to talk about caregivers and people that take care of someone with a chronic illness or who is unfortunately dying of their physical condition. That could be a spouse or a family member or it could be a non-related caregiver maybe a volunteer from church or somebody that’s actually even being paid caregivers often times their grief is unexpectedly intense to them after the person passes or the progression of the disease changes in some way and they don’t realize. And other people may not realize that the person who is physically caring for the patient is because they’re physically involved with a person on a day to day basis. They when the loss occurs when the person passes away or is maybe non-responsive then they may suffer more loss than they may be or even prepared for for themselves because now they don’t have this person to interact with on a daily basis.

38:59 And that’s something to think about when you’re possibly dealing with a caregiver that you know who’s going through a recent loss or a change in that in their in their patients condition. 39:17 I just want to briefly just mention the holidays and we are in a holiday week and you know there’s a lot of joy and excitement around you know that is not going to be the feeling for everybody. There’s always going to be people hurting around us. And I would say for the holidays. Take the advice of others only if it works for you. It can change your routine. Only if you think it’s going to help you. And just remember that this might be a good time to implement some of those personal rituals for healing to remember your loved one you might light a candle or say a toast or write a card to that person and this is a really big one and I think that can really help people heal is to give to others. It’s very healing. It put your focus on someone else.

40:13 And I mean there’s been many much literature out there about how volunteering for the most part it usually improves mood it might be a time to develop new tradition. Maybe you’re going to take a cruise or do something just totally different and and some of your old traditions and be open to new or surprising possibilities. 40:40 You know that the holidays might bring some laughter and peace to you and do not feel guilty if this happens.

40:47 And you know it’s just a time I can be gentle with yourself and it’s OK to cry.

40:56 And so just have a few things to remember just to kind of wrap this up. Is that learning to live with illness loss or disability. It’s a process and it evolves over time. It’s you know it’s a healing journey. It’s important to mourn our losses and acknowledge them. This allows us to feel validated. And I certainly have my ups and downs and will have some cries at times but once we can express ourselves and allow ourselves to experience the loss that can release us to move forward and shift focus on what we still have today. It also again could be an opportunity to be someone you never thought you would or could be like leading to some other path that you didn’t think you would be on. And has met different people along the way that you never would have met. And to remember that life is for the living it takes effort to begin to live again.

41:59 You have to create a meaningful life. It doesn’t just happen. You have to put some time and energy into new hobbies new relationships even if that’s just one little step at a time.

42:12 I would also just remind you to express your feelings because it helps work through the grieving process and many losses for a person with illness and the family. Remember that illness is the bad guy not another person or yourself. And be patient it can take months or even years to absorb a major loss and accept your changed lives. Seek outside help when necessary. If grief is too much to bear seek outside professional help to work through the grief and losses. This is a sign of strength not weakness to seek help and some of the resources that we have selfcompassion.org. There is imagery and learning how to be kind to yourself. On that website there is griefshare.org. That you can put in a zip code and they’ll connect you with a grief support group in your area. There’s other things that we have. Catherine do you want to share one of the ones you work on.

43:29 Well I mentioned it in the top it just insight timer. It’s an app you can put on your phone and there’s healing imagery to help you leave to help with healing and recovery. And I just encourage you know are just to find what is relaxing for you but we just know it’s proven that imagery and visualization and relaxation brings on the relaxation response and just has so many benefits for our body and our mind.

44:03 And so now I guess it’s time for questions. I want to thank you all so much for having us on your podcast today thank you both so much. That

44:14 was really great. And you know it’s a really great strategy. And you know you talked about a lot. You know is a very difficult topic so thank you both very much. We do have some questions from the community. We have talked about this you know a little bit in the talk. But you know just to kind of explicitly talk about you know what people asked. So you know you did but you also did mention I think Catherine you mentioned about people telling their story. And so I did also kind of want to plug that at SRNA we do have kind of a few outlets where people can tell their story because I agree I think it’s really important. It’s a way to kind of make you feel less alone and also to read you know about other people who may be going through similar things.

45:04 So we do have our Hope Ambassadors on our Web site which we publish monthly and we also have a blog as well so if anyone is interested in sharing their story I’m always very honored to share those stories. You can e-mail [email protected] to do that as well. But one question we got is that this person is diagnosed with TM in 1978. And so it’s been you know nearly 40 years later and they’re still stopped in their tracks by a moment of intense grief sadness or frustration caused by some seemingly small and insignificant difficulty in their day. For example, they can’t get their toes straightened out in their shoes while wearing their braces and they end up crying feeling overwhelmed and it takes 10 to 20 minutes to move on with their day.

45:53 And they’re asking will this ever end? well I’m glad this Sandra. I’m

46:00 thinking that if they if a trigger happens like that the cramp in the toes or other things that they just might look at it differently than oh no this here this comes again they could replace that thought with another thought like I can get through this. What did I do before when this happened and maybe set up a routine for dealing with the trigger rather than just reacting to it in dismay or sadness or grief and just you know stop take a deep breath and go OK how did I fix this before what do I need to do. Because once I find a treatment for this and follow through on it whether that might be going in to see the doctor or getting massage therapy or going to physical therapy making it more about the treatment and just getting through it rather than a bad thing because if it keeps happening and you always think of it as a bad thing then you’re what will follow is bad feelings.

47:26 Emotion grief. And if you want to just move through that then I would try reframing it in a different way. Oh this is happening today. I need to go do this to get rid of that so that I can move on to the rest of my day.

47:44 Does that make sense.

47:47 Yeah. You know I think it makes sense. Katherine? you anything to add to her.

47:53 I just agree with everything she said just trying to reframe and identify those triggers. And once you know those you can identify the thoughts they’re proceeding whatever emotion she’s having and your work to change those thoughts. And you know I really like imagery and things like that.

48:12 So you know I would say implementing OK I’m going to just do I feel this feeling coming on I’m going to do some deep breathing and kind of reset myself to do some breathing you know like deep breathing, in through your nose out through your mouth until the feeling passes. And

48:35 I would just add that since she’s been suffering with this for 40 years I think it’s what you said, that it’s it may be harder to reframe because we are not trained to reframe our thoughts. We just have our thoughts and then we have our feelings that follow that that’s how we operate until somebody tells us differently like a therapist. So she may want to see that she may want to enlist the aid of a therapist that can work with her on this and help her retrain herself to instead of every time this happening feeling bad.

49:20 It’s come up with a plan right.

49:24 You have a plan for when that happens and follow through with the plan. Yes I think that’s good.

49:34 OK. Thank you both. And that’s really great advice. And I know that’s a you know could be a very difficult experience being frustrated by these kind of small things. So thank you both. We also did get another question. Sandra you talked about kind of the difference between grief and depression and you know that they’re not the same thing. But you know some people may experience both. So one question been saying how do we get people to understand that I’m experiencing actual depression and anxiety and comments like chin-up. But look at all the good things in your life you know don’t help that this person hates these comments that they’re keenly aware of the good things in their life. But you know after a diagnosis of TM and dealing with paralysis you know how how does this person get people to honor that and not offer that kind of unhelpful advice. 50:32 Well that that goes to the communication piece of when you’re working with a therapist because a lot of times when one of the things that people tell me is that someone doesn’t get what they’re talking about and it could be their illness or it could be their kids it could be any number of things. So communication is a key.

50:56 So you can make I feel statements such as like when the person says Chin up or you know just get over it or something like that you can say you know that you have to be able. And you might even want to rehearse this. I tell people all the time there’s nothing wrong with coming up with an with a phrase so that you can you know just end that conversation and direct it somewhere else so that it won’t cause a rift between the person that’s saying it but it will get them to understand that it’s not helpful. So something like I hear what you’re saying but right now that is not helpful to me. And so let’s change the subject. That would be one thing to do. Another thing to do would be saying when you say that it makes me feel like I’m not capable of changing and I am but I have to do it on my own terms.

52:05 And then that person might hopefully will go well. Oh I’m sorry. And you can redirect the conversation. These things that we’re not used to doing that we haven’t been taught to do. Might be harder to do just on the fly. So I encourage people to rehearse them to themselves and if they do it the first time with that person and it doesn’t work out the way that I wanted to keep trying. It’s

52:36 a practice and.

52:40 GG, I just added this because I just recently listened to another podcast and one of my favorite people and she is also a wonderful resource for people. Andrea Hansen she is life master certified life coach. She also has a podcast and she wrote a book Live Your Life Not Your Diagnosis. I would recommend you know any of the listeners to read her book but she just did a podcast About Do We Always Have To Express Gratitude. And basically the answer is no because that doesn’t work for everybody. So again you have to work with what works for you you and you shouldn’t feel guilty or bad you know if that gratitude isn’t work you’re white knuckling it you don’t want to be. Maybe it’s just not working for you at that time so I think that just kind of plays into you know what the question is about that you know we’re just all individual and I like Sandra’s idea of rehearsing something that you can just say without having put too much thought into it.

53:51 You just know what you’re going to say.

53:55 Right. Thank you both again.

53:58 And then this question a thing kind of speech today the fact that when something like this happens like a diagnosis of one of these disorders it affects more than just the person who’s diagnosed. You know what affects the family and friends of people. You know the person who is diagnosed and so you know it’s kind of a comment rather than a question. But I still think important that you know her daughter’s had TM for 10 years and that she amazes her with her perseverance and that you know her mother experienced grief for what she has to deal with daily and that she has a hard time kind of accepting of her plight in life that causes great sadness for her. Do you have any suggestions for Kennett’s family members who are dealing with grief related to you. You know a family member was diagnosed with one of these disorders.

54:55 You know we talk about strategies but I think of specifically to this question you know as a parent of a very disabled child I can definitely relate to some of the feelings she’s having and you know I feel like a kind of ups and downs and I feel like I’ve surrounded myself with some really awesome caring people. You know I would definitely try to build her support network whatever that might be. I have a really great caregiver that helps out with my daughter and I think you know we just have to laugh about stuff you know because they can do you and get really bad and you know sometimes just laughing crying and just letting yourself feel those emotions again. You can kind of just get back in it and you know. I definitely realize it can be exhausting but I would say for her to just be sure that she is doing things that take care of herself that she does have an outlet that she does go do things with her girlfriends and not feel guilty about it and that she deserves to go do those things and they will help her to be a better parent about her.

56:14 She’s married a better wife and just not feel guilty about that. She needs those breaks and she needs to get out and do things just for her.

56:28 And you know I you know I really appreciate both of your time today. I think this is a difficult topic but a really important topic that affects all of us in various ways. So

56:44 you know I really appreciate you both taking the time and you both giving concreate strategies on this topic. We’ve never done anything on this topic before so you know we really do appreciate both of your time today.

56:58 Thank you. Great. Thank you so much for having us.

57:02 Thank you. And so just to our listeners you know as some of our members may know we at SRNA and then also the greater community experience the loss of this past summer of someone very special from our community Pauline Siegel was one of the founding members of SRNA so you know we go through this podcasts without mentioning her. So in her memory I just want to mention too that there’s started a fund, the Pauline H. Siegel Eclipse Fund for Research that we’ll be kind of announcing more about in the coming weeks. But you know I did just want to mention her as well. And then also another reminder to everyone that this will be made available on our Web site on iTunes and in our resource library for download. So if you want to repeat everything you know you can find that recording there as well. So thank you both so much.

Resources:

Elisabeth Kübler-Ross

https://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross

https://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

https://selfcompassion.org/

https://www.griefshare.org/

https://insighttimer.com/

Live Your LIfe, Not Your Diagnosis: How to Manage Stress and Live Well with Multiple Sclerosis Paperback – February 25, 2016 by Andrea Hanson (Author)

https://andreahansoncoaching.com/do-we-have-to-be-grateful/