Whenever I’ve tried to trace my illness as part of my conversations with my doctors, my mental health therapist, or just with my mum, I can tell that my symptoms started in infancy, probably even while I was still a foetus. Whether some of the phenomena is what developed into autoimmune disease, or simply made me susceptible to autoimmune disease is up for debate. It’s been a long journey.
Even so, my health has deteriorated a lot in the last 7/8 years. Between disease progression and side effects from medications a lot has changed for me including my physical appearance, fitness levels, mental health status and general outlook on life. Finding acceptance is a day to day, and often, uphill task.
This past weekend I attended an event that has in the past meant long hours sitting and listening to speaker after speaker, intermissions where opportunity to make new connections and invariably run into old connections, lots of photo sessions and so on. In the past, I’ve loved every minute of it.
In the run up to the weekend this year, I found myself worrying about things I would never have given a thought to 3/4 years ago. I worried about sun exposure, pain levels, exposure to infections, discomfort from sitting too long, dehydration, skin issues. All these had fixes or at least some kind of mitigation with early preparation. Sunscreen, pain patches, face mask, special seat/cushioning, moisturisers, and other little things that help people with autoimmune disease cope.
I did not, however, expect the sudden dread that hit me on the morning of the first day of the event. The dread of meeting with people who knew me in a different time, when I was younger, a fitness fanatic, super active and most definitely not as battered by Lupus and other autoimmune diseases as I am now.
I did not expect this feeling. I did not expect how strong it was. And when I fought it and made my appearance, I did not expect that I would be so preoccupied with the changes Lupus and autoimmune disease have made on me that I would almost hate the socialising part of the event.
I noticed old friends faces when they recognised me but were also shocked by my weight gain, my moon face, my inability to walk properly. I noticed the old friend who walked up to a group of friends and greeted everyone enthusiastically by name, but then wasn’t sure if it was really me, so she introduced herself. I noticed the old friend who had heard I was unwell but had no idea to what extent so when she saw me she just felt awkward. I noticed the old friend who came at my illness like she could fix it and ended up saying all the wrong things. I started carrying the burden, like I could make it all better for them so they didn’t have to deal with my being ill. That was exhausting!
And then there’s the comparison aspect of reunions. People try to be kind and respectful, but as they introduce their husbands and kids, you see them look around for yours. And even though I know as clearly as day that my reasons for not having a husband and kids have nothing to do with Lupus, a weird part of me associates my rather different life path with the turns illness has forced me through.
At some point, I retreated to what turned out to be a quiet place where I could watch but not interact with people. By then my mind was in a deep dark space. It took everything to reach in and pull out the positive coping skills I’ve been learning.
I attempted to spend an afternoon immersed in the beauty of african fabric prints and interpretive fashion design. I’ve never seen so much colour! And the hair! I witnessed so much genius in hair design … and then I started thinking about how painful it would be for me to spend the hours it takes to wash, dry, straighten, oil and design my hair into anything let alone any of the braid and knot designs I was seeing. Then I thought how much fabric I could buy, how many outfits I could have made for me with the cash it cost to pay for my monthly medical care.
Why stop there?
I thought about all the things I have wanted to accomplish but have either had to abandon, delay or change plans for because of illness. I thought about relationships, romantic and not, that have ended or been destroyed by issues directly related to my constant illness. I lingered long over the memory of the man I thought could be a life companion. I doubt that our relationship failed so spectacularly because of Lupus. That failure had had a lot to do with our personalities and our priorities, but Lupus and all the changes it made on me cemented the end.
Of course, I have discussed all these things with my therapist, and if you’d asked me on Thursday I’d have said I was finding acceptance and finding wholesome ways of coping. But by Sunday I was unravelling.
I don’t know how much of my mental health challenges are independent of or caused by Lupus or any of the other autoimmune syndromes that affect me. Either way, I know my mental health affects my autoimmune state by either helping me cope better, or by creating stress states that can trigger flares.
If I zoom out, I am not surprised by mood flares. Over time, and lots of help, I have learnt to recognise the bad zones and been equipped with basic skills to help me get out. That’s not to say that I won’t find myself coming too close to black holes as I did this weekend. And some of those times I will need a bit more help to right myself. But once I recognise a pain zone, here are a few things that help me :-
- Rest. Fatigue can impair my thinking, so resting is an important part of healing
- Write down how I feel, and attempt to identify why
- Listen to uplifting music
- Light exercise / walk with my dog
- Breathing exercises
- A shower or bath with scented soap
- Read a book I’ve been looking forward to reading
- Talk / spend time with a trusted friend
Sometimes, my basic first aid kit for mental health won’t work, so I know to call my doctor or therapist and go in for care. My family and a close friend are also able to tell when I’m too close to a black hole and can either support me through the first aid phase or make sure I get help when it is definitely time.
Part of accepting my autoimmune condition, has been learning to accept the mental health components of it. That’s what this past weekend has been about.