How to Cope With Stress When You Have Myasthenia Gravis
A columnist offers strategies to manage the days when life gets to be too much
What do you do when life just gets to be too much? Too heavy?
If you’re reading this, then I feel it’s safe to assume that you’re a fighter, so you likely do the same thing I do and just keep fighting, pushing forward. There is no throwing in of the proverbial towel.
In September, I shared that I lost my great-grandmother when she was the respectable age of 104. Since then, life has continued to throw my husband and me curveballs. That’s led to an accumulation of stress.
Stress, it’s well documented, is never a good thing for folks with myasthenia gravis. It can trigger symptom exacerbations, flares, and, if left unchecked, a myasthenic crisis. None of these are good scenarios.
But what do you do when life is too much? When you’re tired of being strong? I posed this question to my counselor during my appointment last week. She responded by asking me the same question. What do I do when life feels too heavy, too much?
I have a few coping strategies that I use to keep my stress levels in check.
Coping strategy 1
I compartmentalize, triage all the stressors that have led to me feeling that life is too heavy, and pick which stressor needs to be addressed immediately. My emergency management training from the Army pays off in these circumstances. I assess and manage the immediate threat, and once that’s handled, I move on to the next, and the next, and the next.
Coping strategy 2
I have a counselor. I talk to her every two to four weeks, depending on what’s going on. We talk about my PTSD and the grief that comes with having a disability, and on days like today, she’s a sounding board. Sometimes all you need is to have a safe place to “verbal vomit” about everything to someone who won’t judge you.
Coping strategy 3
I sculpt or use one of my many creative outlets. In the past, I’ve discussed how important it is to have a hobby. Having hobbies is for more than just filling the days; they can provide an outlet during stressful times.
Coping strategy 4
I turn to my tribe, my support network, and my friends. I don’t always have to talk to them about what’s going on. Sometimes just being in their presence and having their companionship is enough to help the world feel not so heavy, for the burden to feel lighter, for the stress to lessen and not cause a symptom flare or exacerbation.
Coping strategy 5
Humor. I choose to laugh because crying makes me short of breath. I have a dark sense of humor that my husband, thankfully, appreciates and frequently encourages. Sometimes there are situations so insane and stress-inducing that no one would blame another for being crushed under their weight. Humor helps lighten the load.
Life is stressful. We encounter daily stressors, stressful major life events, and some things that are so far in left field we never could’ve seen them coming. Having effective coping strategies to help you mitigate this stress is critical when you have an autoimmune disease like myasthenia gravis.
These are just a few of my coping strategies. What are some of yours? Please let me know in the comments below.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
Thanks for sharing those useful tips. I find that the reaction I have immediately after hearing bad news can result in a flare up. I think its important to find ways to strengthen the inner self so that when one hears of something negative the whole body does not have an adverse reaction....being shock-proof :)
I lost my beautiful sweet daughter to breast cancer in September and two weeks later I lost my sister. I can only say that I have cried, screamed, and asked why God. Does anyone have any suggestions?
Thank you for sharing, Bonnie. I am so sorry for your losses; both of such a huge magnitude. We are currently going through the end of life stages with my father-in-law due to cancer. The only thing I can suggest is to surround yourself with your support team. Lean on them as much as you can and as much as you need to. Ask for help with the small things so you don't have to worry about it. While my husband has been gone, I've been leaning heavily on my friends; they've brought me meals, come and sat in the house so I could safely take a shower, etc.
Ask for help, and accept the help that is offered. Sending you peace and calming thoughts. - Shawna
Having a hobby is what I've done in recent months. I've taken up rock painting! Between Amazon, You Tube and some great books for ideas, I love it. Relaxing, I can sit with little energy output, friends join me sometime and alone or together, I have a productive worthwhile time. I began painting colorful Pebble Pets and after they are completed, I put them around the bushes in the nearby children's playground for them to find. So while my day may start out dragging and not so good, this helps to elevate my spirit and purpose.
Thank you for sharing Patricia! I love the pebble pets. Sometimes that's all we need, is an outlet that is fun and brings smiles not only to our faces but to others as well. - Shawna
Hi,, I am a Christian. I wouldn’t make it with out the HolySpirit. MY problem is energy, or lack of it. I have always been go, go person. I can’t handle this. I feel lazy, I know I’m not. But what do you do?
Thank you for sharing Charl. I am spiritual though faith does not play a role in how I manage my stress. I do like spending time outside and with my animals when I am able to. We have 30 acres, so going for slow walks on the flatter areas has proven to be helpful. I struggle with the feeling of "laziness" as well. I take the breaks I know I need but feel like I should be doing something else thought I know at that moment rest is what I need. - Shawna
New I am in remission. I take 5 mg. Of prednisone and an anti depressant. It has been 4 yrs. I started out with 30 mg? Of prednisone. Has anyone ever gotten of meds. All together.?
I have late-onset MG and life-long clinical anxiety. Other than Xanax, do you have any suggestions for this sub-group of MGers? Xanax has helped me a little through the latest exacerbations/flare-ups, but I'm looking for more holistic approaches.
Hey there Mike. I was diagnosed with MG in my mid 30's. I also have PTSD. I see a counselor on a regular basis to help me manage my PTSD and we utilize a type of therapy called CBT (cognitive behavioral therapy). It has worked well for me. The better my anxiety, depression and other aspects of PTSD are managed, then the better I can handle the day. I watch cartoons and avoid the news because the state of the world is angering; I rely on my husband to provide me a cliff notes version of the important things. I have a phrase, "not my circus, not my monkeys" that helps remind me when I'm taking on the stress or am upset by another's actions. I cannot control the actions of another, only my own. I choose to focus on the positives and the things that I can control in my life which has helped reduce the stress and anxiety I feel. I also use an app called "insight timer" that has guided meditations and relaxing/soothing music. I hope some of this may help. -Shawna
Jonathan D AUTORE
I know where you are coming from. At the moment, I am in my VENTING phase .... much like your VERBAL VOMIT phase. I am currently in REMISSION and taking over 5500 MGs daily of MEDS to keep me that way. For 8 long weakening and suffering months, not a single doctor or medical person could diagnose my RARE DISEASE of ACUTE OCULAR and GENERALIZED MG.
I was finally diagnosed by a very intelligent third floor nurse at the second of five hospitals of 2020 .. who recognized my symptoms from the other patients, that she has had in her career. She got me a NEURO CONSULT, who ordered my ANTIBODIES TESTS ... which were all OVER THE MOON. So set aside time for a hobby, with me it's outdoor gardening (now that I can get up from kneeling without crawling to a chair) and taking a music class at the neighboring Community College. Also REMEMBER there is always TOMORROW ... when you are too weak or tired to go out grocery/meds shopping ... and must go lie down.
I am in a VENTING PHASE, as my two RARE DISEASE FOUNDATION RESEARCH Groups have acquired so far, over 1500 medical documents, tests, and consults, that the doctors and hospitals REFUSED TO RELEASE TO ME. I know now why I was speechless and 100% deaf for 4 months, due to antibiotics OTTOXICITY, why they slit my throat, how I all but died and had a CODE RED due to a anesthesia OVERDOSE, as I was moving, suffering, choking, and on my side with phlegm too much for their CATSCANS and MRI. I also know why I had little memory of the first hospital, as they were feeding me MORPHINE and FENTANYL , as they could not ever diagnose my MG, so they transferred me to another hospital. So I VENT now, but take my MEDS religiously to stay in MG REMISSION. There is always time to do it TOMORROW.......