Thursday, November 29, 2012 1:00 pm – 2:00 pm EST This discussion is archived.

Psychologist Amy Wood, who has helped countless adults with all kinds of challenges to identify and accomplish what’s meaningful for them, will host a live discussion for patients with myositis. Dr. Wood, who has a myositis patient in her family, is an author (“Life Your Way: Refresh Your Approach to Success and Breathe Easier in a Fast-paced World”), is a speaker and a columnist as well as a psychologist in private practice in Portland, Maine. To learn more about her, go to her website at www.amywoodpsyd.com.

Ask a Question
TMA:

Amy Wood:

Welcome everyone, and thank you for participating in this live chat today. And thanks to the Myositis Association for making this happen.

  • Struggling with coping and retaining some sense of purpose and usefulness as a father/husband/individual.

    Participant:

    I was in a very dark place yesterday when I got the email from TMA about this live discussion. Fortuitous I hope. I’m 48, have been dealing with polymyositis/scleroderma for 6 years, and I have kids as young as eight years old. I feel like a shell of my former self–physically, mentally, emotionally. A strategy for success seems a pipe dream today, out of reach on Maslow’s Hierarchy. I am struggling with just coping and retaining some sense of purpose and usefulness as a father/husband/individual. This may be too much for you to tackle in a paragraph or two, but any words of useful direction would be most appreciated. I am currently taking 40 mg Prozac.

    Amy Wood:

    There are many excellent questions today, and I see some common themes. The good news is that you are not alone, and there are answers. One challenge you are all facing is keeping up in a world that is going way too fast — a challenge for all adults, but especially for people with chronic illnesses like myositis. Keeping up in a world that is only going to get faster involves stepping away from all the pressures and distractions and creating your own standards, so that your goals are achievable. The other important piece is assessing your energy and resources on a regular basis, adjusting your standards and strategies according to your unique situation as it fluctuates.

  • Lack of Energy and Grief

    Participant:

    My problem is in my legs…I am on Enbrel and IVIG Therapy. My walk is wooden and sometimes aided by a cane. I get tired so easily and used to have plenty of energy. I also have grief from the unexpected death of my husband on Sept 7th. What can I expect for the future?

    Amy Wood:

    One of the biggest challenges of myositis is dealing with the unexpected curveballs of life on top of the daily stresses of your disease. Change is a constant in our world, and it’s hard to keep up. And life is not fair. For example, you may be having a particularly hard time with your health, and then out of nowhere you find our an aging parent needs your help, or a family member dies, or a natural disaster hits. The solution is to accept that events are random, despite the media telling us that we can control everything. All we really have control over is our attitude, our character, how we respond. And again, every day is different in terms of the challenges you face, your energy level, etc., so you have to check in with yourself regularly and ask, “how can I make this day the best it can be considering the challenges I face and the resources I have?”

  • I no longer care if I live or die since the pains would cease to exist.

    Participant:

    Hello Dr Wood, I have PM/DM, Vasculitis, secondary Sjogren’s Syndrome, secondary Raynaud’s phenomenon, sleep apnea, pulmonary fibrosis, concentric hypertrophy of both Ventricles of me heart. My upper and lower GI is affected by the autoimmune diseases also. All the above was progressive dating back to the early 90s till 2007 when each was diagnosed after the diseases were more obvious to the different specialists I have the following questions and mean them with the most respect 1. How can a doctor understand the physical pain we are in if he or she does not have a similar disease with pain to compare with?2. How can a psychiatrist understand how we may feel from a depression, anxiety, or if one is suicidal without having similar diseases that cause you pain, breathing problems, being sensitive to the sun, temperature changes that cause you to have allergic reactions, or having any incurable disease or cancer?3. I don’t believe I would commit suicide because my religious beliefs is that it is a son against God. I am no longer afraid of death and probably be more likely to risk my life to save others. But I no longer care if I live or die since the pains would cease to exist. So is this a bad thing to feel this way emotionally. I have not had a remission since May of 2007. I still work full time even with all the pain and weakness, and fear to stop working because I would probably lie around and die even quicker. Do most feel as I do?

    Amy Wood:

    A really tough thing about having myositis is that it’s not a common experience, and so it’s hard to find people who really understand what you’re going through. I want to affirm for all of you that most helping professionals — medical doctors, therapists, etc. — may not know what it’s like to personally have myositis, but they are trained to get inside your perspective and see things from your point of view. That’s why seeing a therapist can be immensely helpful.

  • Is it better for a myositis patient to have a job?

    Participant:

    Is it better for a myositis patient to have a job or not, in terms of his/her psychological, spiritual and sentimental health?

    Amy Wood:

    The advantage of living in a world with so many options and distractions is that we are encouraged to do what is right for us, to make choices that resonate with who we are deep down. This means that you can decide what will work for you to make your life with myositis easier. Think about your resources, how much energy you have, what your options are, and then consider what you are most passionate about. Maybe a job would help to make your life better. Or maybe having a baby would help? Remember that it’s entirely up to you, and only you know what will make your life more meaningful. The secret is to make room in your life to be still and quiet so that you can hear the wisdom of your inner voice. The answers are there.

  • I have a difficult time thinking positiviely when I discover something new that I cannot do.

    Participant:

    I know that we should focus on what we can do rather than what we cannot do. But I have a difficult time when I discover something new that I cannot do. It serves as a reminder that the disease is continuing on its destructive path.Any suggestions on how to deal with this?

    Amy Wood:

    There is a lot of pressure in our world to think positively, focus on what you can do, ignore the negative. A common cultural belief is that you can be happy all the time by simply deciding to be happy. Well, I want to be frank in telling you that all this postive thinking hype is part of the reason so many people get depressed and anxious. It’s impossible to be happy all the time, especially when you have a chronic illness. I advocate optimism, which means that you look at the reality of your situation, acknowledge the negative, and strive to make the best of what you DO have. The key here is knowing that happiness is a climate, a general way of being that involves lots of ups and downs, success and failure, good and bad. Being a successful adult means allowing yourself to experience the pain of life so that you can face what’s hard and move through it. Pasting a smile on your face when you feel like crying is denial and it will only make you more unhappy. Embrace the emotions of your life — even when they are unpleasant — and you will find light and joy. I’m not talking about wallowing in misery; I’m talking about being in the moment of your emotional experiences and not running from them.

  • Seeking advice for when you have a complicated medical situation and friends ask about it

    Participant:

    What advice can you give when you have a complicated medical situation and friends ask about it…how do you help them to understand without giving so many details that it is too much for them to take in

    Amy Wood:

    If you feel that myositis is too much a focus in your life and you’re tired of talking about it, you can let your friends know that you’d rather talk about something else. Try not to get irritated. Remember that people ask because they care.

  • How can I make changes in our holiday traditions without disappointing everyone?

    Participant:

    Amy, I have DM and it is just now in a very active stage. I always have Christmas here and, honestly, I just can’t bear the thought of all the preparations to be made. It is difficult for me to even cook small meals when I am like this. How can I make changes in our holiday traditions without disappointing everyone?

    Amy Wood:

    Remember — especially during the holiday season — that you can say no if you don’t have the time or energy for something, or if you just plain don’t want to do it. Don’t feel like you have to stick with traditions that no longer suit you. Make up new traditions that fit who you are now.

  • How can I improve my outlook?

    Participant:

    Amy, often I do quite well in coping with my disease but for the past few months I have been angry all the time, even being mean to my family members at times and saying things I really don’t mean. I am just so worn out with being weak and in pain and not having the life I imagined I would. Before I got IBM I was patient and easy going and now I just can’t seem to tolerate anything big or small that comes up. Please let me know what I can do to improve my outlook.

    Amy Wood:

    It’s normal to fall apart, to have meltdowns, etc. when you feel overwhelmed. You can’t expect yourself to be calm and rational all the time, so forgive yourself if you have an outburst or in any way act irrationally from time to time. Going forward, make sure to take excellent care of yourself and say no to what is just too much for you, so that emotions don’t build up so much.

  • Regaining Confidence

    Participant:

    How do you regain confidence after several recent falls?

    Amy Wood:

    It’s tough to regain confidence when you have setbacks with illnesses. Be easy on yourself and remember everyday is a new day. Take it slow and do only what you have the energy for. Look at other areas you are doing well and focus on that.

  • Should I mention PM during a job interview?

    Participant:

    I’m applying for a new job, and I wonder if I should mention having PM at any time during the job interview? Thanks.

    Amy Wood:

    Usually when you are interviewing for a job the first meeting is usually general. After the first meeting if they take you to the next step and it looks like you are going to get the job you should tell them about your current situation. And you can explain to them how you are going to handle it.

  • Online Recommendations

    Participant:

    As I move slower and slower, i have found the world of computers some comfort, as they are more patient than we humans. Games, online shopping, and writing make things easier. Do you have any suggestion for website?

    Amy Wood:

    The internet is a wonderful resource for all of us. What ever your interest is you can find it on the internet. Just google your interest. Remember to still socialize with people.

  • Virtual Volunteer Opportunities?

    Participant:

    How does one volunteer while being immune suppressed? I would like to make a difference. I applied to be a volunteer at a cancer resource center for a few hours a week and had to decline due to getting an infection. Is there virtual volunteering?

    Amy Wood:

    Yes. Search different associations you might have interest in.

  • What emotional symptoms of patients with myositis and associated diseases warrant seeking psychiatric help?

    Participant:

    Hello Dr Wood. What emotional symptoms of patients with myositis and associated diseases warrant seeking psychiatric help? Sometimes we just need people close to us to just listen to us, without blaming our life style for all our woes. This is why the myositis forums and support groups are a good outreach.

    Amy Wood:

    It is normal for every adult to experience ups and downs with their emotions. But if you’re feeling sad for a long time… say 2 weeks and you can’t shack it you may be suffering from clinical depression and you may need professional help.

  • Comments from complete strangers can be the hardest thing for me to cope with

    Participant:

    What is the psychology behind why comments from complete strangers can be the hardest thing to cope with? My dermatomyositis has completely changed the way I look (among other things) so much that people don’t recognize me. I have aged about 25 years…I often get mistaken for being the mother of friends my own age. While I and most of my friends have got used to the way I look, comments like “Do I want to use my pensioners card” and “You used to have a young girl working here” can send me unexpectedly into a tail spin. Any good coping strategies for this?

    Amy Wood:

    It’s easy to get upset when we are triggered by comments that we see in the world that remind us of our disease and what you have lost because of it. This is normal, all adult experience this in various ways. Life is about loss sometimes. If you except that feeling sad in this situation is normal, you will be able to move on more quickly. By focusing on what is going well and what you have gained in your life also helps.

  • How do I get out and feel that this illness does not define me?

    Participant:

    Hi my name is Cheryl, I am 27 years old I have been battling polymyositis for about 5 years now going on 6 years. Just recently I saw a gastro-doctor and they are going to do an endoscopic ultrasound and biopsy on the mass (24mm) on my pancreas in December. I feel a bit defeated at doing another procedure. I know that it good for me to know what it is but at the same time I hesitate, well actually nervous. I seem to put on a brave face for everyone and myself on the outside but deep inside I feel scared. Scared not about the doctor doing it, I have confidence in him. So how do I overcome this nervousness/ stomach in knots feeling? I feel so young to be going through all of this ( I got sick right after graduating from college w/ my degree in medicine got accepted to med school, then I had to opt out of it). I feel stuck in one place how do I get out and feel that this illness does not define me but I define it? Sometimes I feel lonely in this but I know I am not I have my mom and dad. Please give some advice.

    Amy Wood:

    Nobody wants to have a chronic illness but we make it worse for ourselves when we fight reality. The key is to make the most of what is working and accept that you are not perfect. And you will not be happy all the time, no matter what is going on in your life. And remember that you are unique and you get to determine your life path. You can’t control many things in life. Life feels better when you let go of what you can’t control and focus on what you can control.

TMA:

We are at the end of another great discussion! Thanks to all the members who participated today. A special thanks to Dr. Amy Wood again for graciously spending the time to answer your questions.

Amy Wood:

Thank you for your wonderful questions and all the best to you!