Written by Emily A. Filmore with Jerry Williams, President and Founder of Myositis Support and Understanding Association, Inc.
Living with Myositis is hard. Let’s just put out the truth and give light to the darkness:
- Maybe you don’t feel well, although you can’t put your finger on why so you feel frustrated.
- You can’t do the same things you could do ten years ago, one year ago, maybe even yesterday and it makes you angry.
- You can’t lift your children, the groceries, or even a backpack/purse and you feel helpless.
- You miss out on family activities due to fatigue and you feel alone.
- Someone says “You don’t look sick to me,” and you feel doubted.
- You have so much pain sometimes that you wonder if fighting is worth it, and you feel like giving up.
- Your doctor expresses doubt or indifference toward your symptoms and you feel betrayed.
- You don’t look the way you used to due to medications and you feel disgusted.
- You hear about how bad the symptoms can get and you feel afraid.
Are we just doomed to feel sad, helpless, alone, angry, frustrated, doubted, betrayed, futile, disgusted, and afraid? No. While it is a fact that many Myositis patients experience depression as a result of the life changes, the physical limitations, and the emotional strain of being sick, it doesn’t mean you have to face a life sentence of being sad.
Depression, of course, is a clinical diagnosis that you should address with your doctor. There is no shame in being depressed or in taking medication to alleviate it. If you are feeling so down that you have thoughts of hurting yourself or others, please call 911 (USA) immediately. You can also contact the National Suicide Prevention Lifeline (1-800-273-8255).
We are not medical doctors and cannot give you a cure-all for depression. We just hope to make some suggestions that you can use, some proactive steps you can take to assist and augment the medication’s ability to help you.
A few important reminders before we launch into coping mechanisms and ideas:
- First, realize that depression is common, especially for those living with a chronic illness. You are not alone and you did nothing to cause or to deserve feeling this way. Being depressed does not mean you are a weak person and it is more than just feeling sad.
- Seek treatment, whether it is counseling, medication or a combination of both. Depression is a real diagnosis that should be treated with the same level of commitment as a physical health diagnosis. Know that there is hope in feeling better as there are many treatment options available.
- Be patient with yourself and your circumstances. You will not feel better overnight. It will take time.
- Diet and exercise play an important role in our mental health. Eat well-balanced meals and try to incorporate some form of exercise into your day. The natural “high” from endorphins can actually help elevate your mood.
We want to help you find ways to help yourself by keeping your mind occupied, practicing positive living and avoiding negative people. Do something new today. Or, do something you have found to be rewarding in the past. Avoid depressive thinking and focus on rewarding yourself for improvements you make along the way. Here are a few ideas:
- Practice Self-Love – Start by reminding yourself that this is not your fault. Your medical status isn’t due to something you did wrong, and depression is a very real thing that goes with, but is separate from, a Myositis diagnosis. Many of us have encountered doctors who know little about Myositis and have tried to blame our symptoms on depression rather than seeing it as a distinct diagnosis, concurrent with Myositis. The symptoms are not “all in your head” and you are not “making them up.” Take solace in the fact that many of us have experienced the same illogical conclusions from doctors, which has led to delayed diagnosis and ultimately, delayed treatment. Know that you have the right to find a doctor who will take you seriously.
- Keep a Journal – Writing down your thoughts (or doing a voice recording if you cannot type) is cathartic and allows you to be completely honest, even saying things you may be afraid to say aloud to another human being. Keeping a journal of your experiences may help you to work through your thoughts and emotions putting them into a new perspective. (Check out our prior blog entry about journaling to help with medical information)
- Nurture your Soul – This can be in the form of practicing your religion, exploring your spirituality, learning gentle yoga, meditating, reading books, taking small walks in nature and many other things. Many of us have found that when we embrace our inner Being-ness, or our souls, we realize that our bodies are only part of who we are. It helps us to remember that while our bodies may sometimes fall short of our goals, our souls are always perfect and complete, just the way they are.
- Build a community of understanding people – Find a support group, such as the online, Facebook groups supported by our organization, Myositis Support and Understanding, or in-person groups in your area. Reach out to others who you think will be compassionate and don’t be afraid to ask for help and give help in return. Stay connected to others with in-person social outings. Have lunch with a friend or plan a date night with your partner. Avoid isolating yourself; tell your friends that you may need a “kick in the pants” to get you out of the house, but it is what’s needed. Talk about your depression with friends and family in moderation. Try to avoid self-pity, as this will only make you feel worse and push your support system away. Talk to those who you think will understand and support you best and do not forget to ask them how they are doing.
- Celebrate your accomplishments – Even the roughest days can have silver linings if you allow them to. Did you walk to your mailbox this morning? Great Job! Did you clean your bathroom? Wonderful! Did you make it an hour longer than usual without a pain medication? Way to go! Did you turn in an assignment at work with which you are pleased? Congratulations! Look for little things that can break the sadness each day and your smile will grow!
- Have realistic expectations – When you are honest with yourself, you can set goals that are achievable, and which will give you a sense of accomplishment. If you know you have trouble grocery shopping, maybe it won’t be the best idea to decide to run a 5K next week. But you could set a more realistic goal of walking two times around a quarter mile track. If you know that you are bedridden the next day after you clean your whole house, prioritize and do 2-3 rooms at a time. Accepting yourself where you are will relieve you from unrealistic expectations, allowing you to enjoy the life you have.
- Let go of fears – Realizing that you are doing the best you can, taking your medications as prescribed, working toward better health and the rest is out of your control can be liberating. You can stop concentrating on what might happen and concentrate instead on the progress you are making.
- Spread joy – Start a “happy mail” letter writing campaign, donate your time and energy to a worthy cause (within your abilities), or make a goal to smile at every person you see today. The more joy you bring to others, the more you will receive in return.
- Stay on top of personal hygiene – Take showers daily, when able, get dressed each day, and brush your teeth and hair. These things may sound like a no-brainer but are helpful in maintaining a positive outlook.
None of these is THE answer for every person, but we hope you will find something here that you can try. They can also be the impetus for you to find new ideas to help your own mental health.
We would love your feedback. Consider the following questions and post your comments at the bottom of the MSU Blog:
Has depression played a role in your life due to a chronic illness like Myositis? What have you done to address it? What can you start doing…today?
Originally printed on Myositis Support and Understanding's #TipTuesday Blog here (2015). All Rights Reserved.
About the co-author of this article:
Jerry Williams, Founder and President of Myositis Support and Understanding, has a passion to help others living with chronic diseases like myositis. He was diagnosed with polymyositis in 2003 after a 2-year long battle for a diagnosis. He founded MSU (formerly “Polymyowhat” in 2010) in 2014 determined to provide support and education to patients, families, friends and healthcare professionals with a long-term goal of providing patients with financial assistance for things such as medications not covered by insurance. MSU has an active, working board and is in the process of filing for nonprofit status. Jerry previously worked in the financial services industry and has been on disability for a number of years due to myositis and other autoimmune diseases. He taught himself website design/development and graphic design to enrich his life with skills he enjoys and hopes to return to the workforce once he responds appropriately to treatments.