Managing Obsession And Lack Of Control Post-Diagnosis
Hi everyone! I hope you are all feeling flare-up free, and if you aren’t, I hope you have someone there to help! Remember that you always have this community, too.
I thought I’d start at the beginning of my AS caregiver journey and go back to the toughest part of the journey so far — Lisa's official diagnosis and some of the roadblocks that came along with it. Also, I want to go into how I helped her make her peace with her new reality.
Diagnosis day was hard
The official diagnosis was definitely a hard day. It was not a surprise. Lisa has always known she had close family members who were patients with the disease. We also new the disease can be hereditary and when you add together the symptoms she had already been dealing with for many years... well, it wasn’t a shock when we finally got the official diagnosis.
We came out of the doctor's office with a super mixed bag of emotions. On the one hand, there was the obvious fear of what’s to come along with grief for what could be lost. There was also a feeling of peace in finally knowing for sure, coupled with a sense of hope for the future. Almost like we could finally make a plan of attack instead of constantly playing defense.
It felt like hope was lost
We were able to ride those hopeful feelings for a while, but as soon as the next major flare-up came, I could see in Lisa’s eyes that there was something different. It wasn’t the most acute or painful, the longest-lasting nor the most debilitating — but it somehow was worse. I could see that she kind of lost her hope a little. The spark had dimmed a little. It broke my heart and I guess it really sank in, at that moment, what we were up against. A lifetime of flares.
In the past, she could always brush a flare-up under the carpet of the unknown, undiagnosed, unconfirmed. She could blame it on something else, make an excuse, tell herself a story. But, now? "Now" was different. She knew that this is what life is going to look like and not only that — it may get worse! That is a tough pill to swallow and the only answer for it is time and support.
Those early days were the hardest
I think the early stage of post-diagnosis was most difficult for a few reasons. For one, she became obsessed with researching the disease. Second, she would spiral over her lack of control in having an incurable disease.
Her lack of choice in having AS obviously made it worse. She felt powerless. So I started helping her to see what she could control. One of my favorite methods is to ask her to talk me through, one by one, all her tricks for combatting her AS symptoms through prompts. I'd ask her things like:
- What is the best stretch for your back when you are feeling stiff?
- What are the best foods to avoid during a flare-up?
- What is the best mantra you use to focus when you are brain fog?
One by one, we'd check off the list, giving Lisa a sense of control over elements of the disease. This really helps her to compartmentalize her disease instead of trying to tackle it as a whole. It outlines the issues she faces but also the solutions to those issues and this can be very calming.
Letting go of things we can't control
Lisa and I aren't religious, but we also love the Serenity Prayer, which gives us a sense of comfort and wisdom:
God grant me the serenity
to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference.
Second, Lisa became obsessed with researching the disease, and it’s understandable: When you find out that you have a disease with no known cure and can Google horror story after horror story (without any context!) it can be really challenging not to keep digging that hole. Of course, one of the things that makes Lisa a wonderful writer (if you haven’t read her work, firstly where have you been, and secondly her name is Lisa Marie Basile and she is awesome, check her out!) is that she is a very thorough researcher — but this can also be her Achilles Heal as she tends to get super obsessive and can get too wrapped up in what she reads. Again, without context, the internet can be a very dangerous place. One AS patient might have a horror story, but it's unique to them. Everyone's disease is going to be different.
I try to distract through research spirals
One of the ways I was able to assist Lisa in her obsessive research spirals was simple…distraction. We'd get into a new show, listen to music, play a game. Physical distractions were also helpful. I'd give her a massage or we'd go for a walk, changing the scenery. A change of air and light is often helpful.
Through her career as a writer, she has been fortunate enough to write a significant amount of work on the topic of chronic pain. It has almost been like exposure therapy to the realities of her own disease. After getting over the initial hump of over-researching a topic, she is now in a great mental state and able to use her amazing research skills to improve her knowledge of a subject without spiraling as often.
It's a learning process
I am so proud of the leaps and bounds she has made since first being diagnosed to now. Most days you would have no idea she has a serious auto-immune disorder. It is amazing really! And when those dreaded flare-ups take hold, she is far more prepared to deal with it. I'm glad I could help.
Do you use the word disability to describe your AS?