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Living with MG during the loss of a spouse, divorce, or breakup
I see many members urgently reaching out to others for advice on how to deal with the heaviness, uncertainty, and overwhelming nature of loneliness. The experience of loneliness can be incredibly challenging and daunting to navigate if you have not lived this way for a while or if you have become comfortable with the assistance of a partner acting as a caregiver or primary support.
Who here is experiencing this currently or has in the past? What is the primary aspect of MG that becomes a struggle when you lose a partner?
Do you have any recommendations, advice, or action steps for others to find comfort during this harrowing time?
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3 Replies
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When I was initially diagnosed with MG in the 1990s, I was living with my incredibly supportive husband and working. It was hard, but many people were extremely helpful in both my personal and professional life. But, after about a decade, I had to retire on disability due to increased MG symptoms. A year later, I was thrilled to learn that I was in complete remission (no symptoms and no needed meds), which lasted for about 13 years. During this time, I was thankfully able to care for my husband before his death. About 3 years ago, my MG symptoms returned and I’ve struggled since then to take care of myself (fairly well), maintain my home (badly) and keep up my relationships with family/friends (essential for mental well-being). Right now, I use a mobility (white) cane to get around and can’t drive, but I dance (and other activities) with friends/family as often as possible. It’s all hard, especially without my loving husband (whom I still horribly miss all the time). But, my guidelines been to prepare for the worse, hope for the best, and fight for my best life possible!
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This topic hit close to home for me. I was diagnosed in 2019 and was engaged to my partner for a couple of years prior to that. He seemed pretty supportive at first but didn’t really take my disease seriously until the second year when I had my first exacerbation and was hauled away in an ambulance. It was Mother’s Day of 2020, a few months into Covid. This made it real to my two boys, my fiancé and his daughter. They saw me at my worst, unable to breath, talk, hold my head up and they didn’t know what to do (of course none of them listened to me hounding them to be aware). He started pulling away physically not long after that, afraid that I would have another exacerbation. When I was told there was nothing else out there and would have to wait until new drugs were available, my fiancé was upset. “How can doctors do this to you? There has to be something!” After another 9 months without treatments, I was accepted into a drug trial 800 miles away. He agreed to move closer to both of our families. He pulled further away from me. We put the house on the market while I began the drug trial. I was flying back and forth between treatments to pack up the house, while he was supposed to be looking for a job. As we were drive the uhaul truck, he tells me “I thought you would change your mind. I never thought that you would actually move.” I never felt more unsupported than at that time. All of the unaccompanied doctors’ visits, me trying to explain what and why my body could no longer do the things that i did before came even close to that moment. Six weeks later he came to visit us at our new house. Some work commitments had held him back for a few weeks. He seemed lost that we had moved and settled in without him. He acted like a stranger to me. This went on for another 18 months of some sort of commitment at work, his daughter (now 20) needed him, his mom needed help financially. All a load of excuses. The phone calls became more erratic and turned to the occasional text. I had given up at this point, the more that I stood back from the situation, the more that I realized that this was not for sicker and in health. MG had changed too much between us. He was not the supportive partner in this journey. I started to find myself again without the stress of always worrying about if and when he would join us. There was not an us. Now I look at my life – still refractory, without a partner, almost an empty nest, disabled. Who would want a partner that struggles to get out of bad at times, naps like a toddler, no longer keeps and immaculate house, the pharmacist can pull my records without asking my name. Does having a partner really matter if my friends are as close as my family?
I am, by far, not an expert in giving advice. Clearly, I need to hear it just as much as the request asked. What has helped me is; sticking to my routines, finding places where I can bring joy to others and looking forward. Every morning, I have a clean slate to start the day. Wallowing in the would have, could have, should have sucked up close to two years of my life – just keep moving forward.
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Oh Andi, I do feel so sorry for you. I have had MG since I was 17, and I’m now 80 and I can thoroughly sympathise with you. I really think only my mother really understood and one girlfriend who had chronic fatigue. My husband was kind, but over the years he became exasperated, especially after I caught a virus which went to chronic fatigue and for me that was worse than the MG. Our 26 year marriage broke up. I had help from a skilled naturopath/homoeopath and eventually studied this area(a patch over one eye due to double vision, ofcourse!) I became pretty well on this regime and was able to help a number of local MG folk. I could sense the relief, as here was someone who really did understand. Most others don’t really, and you can’t blame them. Take care. It can get better. I am happy and pretty well these days. Kind regards to you. June
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