It’s important to address anxiety, which can make the AS battle worse
Why comprehensive care for AS should include mental health
Note: This column discusses depression. Resources for help are listed at the end of the column.
Can I tell you a secret? I had a mini-panic attack when I started writing this column about my journey with ankylosing spondylitis (AS). It was the middle of the night and I was lying in bed, with my husband gently snoring next to me. I clutched the covers and felt my heart pick up the pace. My chest felt like a huge hand was slowly squeezing it.
Though I love writing and sharing stories, it’s hard to dig through all my feelings. I have some whopping, big emotions when it comes to this autoimmune disease that I get to live with. But some of the hardest parts, like mental health and the anxiety that AS caused me, are important to discuss.
Sadly, I’ve never been offered assistance for my mental health as part of being treated for this chronic disease, though I believe it could have an enormous impact on my ability to cope. Looking back, I wish that I’d pushed harder to receive support in this area.
At the time of my AS diagnosis, I was completely overwhelmed and riddled with anxiety. Not once at a rheumatology or doctor appointment did someone say, “By the way, Jemma, having a chronic illness is a pretty big deal. Your entire life is going to change. I suggest we get you some mental health support, because it’s going to be tough.”
It didn’t help that my husband, Dave, and I were both diagnosed with AS within a few years of each other, which really compounded the difficulty. At that time, Dave wasn’t able to walk without the help of a cane, due to sacroiliac inflammation. Getting to his office in the city, an hour’s trip by bike and train, was out of the question. Concurrently, my back pain and stiffness were so bad that I could barely bend over to help our toddler out of the bath or cook dinner for the family.
During that very difficult and dark time, I remember taking our young children for a walk at the local park and putting on a big pair of dark sunglasses so that I could cry silently without them realizing. I was so scared about our future, and I didn’t know how we were going to deal with this horrible disease crushing our little family.
The following were just some of the hundreds of questions viciously circling around in my anxious mind:
How are we going to work and pay our bills?
How can I help my partner who is in so much pain?
How can we get more sleep, which we desperately need?
How can I stop crying?
How am I going to look after two young children when they need lifting and chasing and hugging and it hurts?
Will we ever be happy again?
Talking to a psychologist
The steamroller of AS flattened me to a place where I was so overwhelmed I could barely think, and I berated myself for not being able to cope. Stress, insomnia, and pain are a terrible combination for anyone’s mental health, I’m sure.
It would have been incredibly helpful to talk to a psychologist about coping strategies, both for the pain as well as the lifestyle adjustments.
The American Psychological Association explains the value of psychological treatment: “A psychologist can … help you make lifestyle changes that will allow you to continue participating in work and recreational activities. And because pain often contributes to insomnia, a psychologist may also help you learn new ways to sleep better.”
I’m pleased to say that it’s been five years since my diagnosis and I am mentally coping much better. In fact, I’d even say I’m thriving. I’ve found work that I love and that suits my condition, I have a hobby that brings me joy, medication that works, and I follow a diet for AS that has dramatically reduced my symptoms. I feel happy every day and spend wonderful quality time with my husband and children.
However, particularly at the beginning of my struggle with AS, I couldn’t see anything good that might be possible. I was deep in a fog of mental anguish. I didn’t know how to cope or what might help.
I honestly think a lot of the anxiety and depression that seem to go hand in hand with chronic disease could be avoided if mental health support was made available at an early stage. I’d love to see psychological assistance offered as an important part of the AS diagnosis process.
Author’s note: If you’re finding it hard to cope or feel you’re in a crisis, please seek support from your doctor or another healthcare professional. Your mental health is important. You are important.
If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7) or Samaritans in the U.K. (samaritans.org).
Note: Ankylosing Spondylitis 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 Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
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Comments
LaToya Scott
Thank you for writing this article. I was diagnosed 5 years ago and it took me 4 months to get myself together mentally. The pain, which came out of nowhere, was debilitating and no one understood it. I looked fine so everyone treated me like I could just take Tylenol and poof I’d be good to go. I didn’t know if I’d be able to continue working, I wasn’t sleeping or eating, and I cried - a lot. I began meditating and that helped. I now speak to a therapist regularly and I’m so much better.
Jemma Newman
LaToya, thanks so much for sharing this. It's really comforting to not feel alone in these challenges. I know what you mean about looking ok on the outside so everyone doesn't realise how much you're struggling! That's great to hear you speak to a therapist, wishing you all the best.
George
I had terrible physical issues and pain and if there was anything that mental strength and perseverance could have overcome, I feel I would have prevailed. I survived even though the disease effectively won. I never felt that mental therapy could have helped me although I can understand the importance of it for many, if not most people. My struggles may have been going on for longer than for many, so even though AS came on like a ton of bricks, when it came, I was more capable than most would be. I suspect that if you don't have times when you could use help and ask yourself if you're crazy, then you probably are. I finally got the diagnosis of AS, and the worst should be over. My therapy is reading articles like yours, and sharing, and praying, just taking care, and trying to be positive.
George
I forgot. One of my biggest problems is fatigue, and it remains. My fatigue is so bad that it prevents insomnia - ironic. Not having insomnia, possibly as much as anything, made the difference in my ability to cope.
Jemma Newman
Ironic indeed! A hinderance is actually helping, in your case. Chronic disease needs plenty of mental fortitude, I've learned, and people probably don't realise just how strong you are to work through all that pain George. I try to stay positive too, and find things that I CAN do, instead of missing what I can't. Wishing you all the very best, and as always, thanks for sharing your thoughts.