This post was really difficult for me to write! Talking about living with a chronic illness is very personal to me, and I’m feeling very vulnerable (Brene Brown would be so proud!). But at the same time, I believe it’s important to share about my journey because the camaraderie of fellow sufferers is what has given me strength so far. I’ve googled my diagnosis and connected with others and realized I’m not alone. I hope I can add my voice and help someone else to know it’s not just them.
I am not a licensed therapist or mental health professional. If you are suffering and need treatment please seek the help of a professional. This post may contain affiliate links, meaning, at no additional cost to you, I will earn a commission if you click through and make a purchase.
Living with A Chronic Illness – Psoriasis & PsA
I have an autoimmune disease called Psoriasis which has also progressed into Psoriatic Arthritis (PsA). PsA has a lot in common with Rheumatoid Arthritis as far as symptoms and treatment. More people have heard of RA, so that’s usually what I compare it with. Mostly, it means joint pain, swelling, and stiffness. Mine mostly attacks my hands, legs, knees and feet. The symptoms lay low at times, and flare up at others. Flare triggers include anxiety, stress, and more. It’s different for each person. I notice when I eat a lot of sugary foods or carby foods, I hurt more the next day.
The Psoriasis part of the diagnosis means I get red itchy patches on my skin. Mine are mostly on my scalp, which is a difficult place to treat because of hair. Guided by my dermatologist, I’ve tried many different treatments and have settled on a biologic injection. It was a tough decision because biologics carry big risks, but they also carry big rewards.
It’s Hard to Admit to Yourself
I’ve had psoriasis since I was a kid, although it was misdiagnosed as dandruff. That’s the thing about these autoimmune conditions: they are routinely misdiagnosed and sometimes even disregarded by doctors until you’re in really bad shape. More recently, I’ve been under the care of wonderful doctors, but I was in deep denial myself and so I let it go untreated for a long time. I tried to pretend I wasn’t living with chronic illness.
Why the denial? Well, to me, one of the most frustrating parts of autoimmune illness is that it’s your own body causing the trouble. Somehow, there is internal confusion and my body literally attacks itself. This causes an overactive immune system that attacks my skin and joints, leaving me exhausted and hurting. It can be difficult mentally to accept that it’s your own body causing the pain. I felt angry and betrayed by my own immune system and wanted to just ignore it. Although I was working on it in therapy, it was a long journey.
Things Got Rough For A While
September of last year, though, I couldn’t ignore it any longer. I had the worst PsA flare I’ve ever had. Walking was painful, my hands were swollen and stiff, and on the worst days even eating hurt.
I canceled all my plans and just tried to survive. I could barely accomplish my work from home. To even get out of bed, I had to take Advil and wait for it to kick in, then make sure I took doses all day to function. As you can guess, anxiety and depression often come along for the ride in situations like this. As a single mom especially it was terrifying.
That’s when I decided to go for it and try the biologic my doctor had been recommending for some time. I’m so thankful I did! And within 3 weeks my progress was amazing. Within 2 months I was back at the gym, dating, parenting, all the things. I have never been so thankful for modern medicine! Moving past the fear of side effects was the best decision for me, and (knock on wood) I haven’t experienced anything severe.
Now the time of Covid has brought some unique challenges. Talk about stress and anxiety! My flares have been way, way worse than usual despite the medicine and sticking around for longer too. I’ve learned to rely on meditation and acceptance to counter the rising panic when it hurts so badly to stand up or to walk across the room. Remembering to eat healthy is also emotionally difficult, but when I can stick to it, I see huge improvements. Emotional support is also huge and my boyfriend is phenomenal at this!
If You Aren’t Living with a Chronic Illness:
If you aren’t someone who struggles with chronic illness, but know someone who does, please remember this. We don’t need any more suggestions on how to get better. Unless we ask, please don’t make suggestions about a new diet or lotion or cream. We’ll smile and nod and thank you, but chances are internally we are grimacing. Everyone has a “have you tried” for us and we’re tired of it. We know you mean well, but just avoid this altogether.
Something you can do is to check in on us. I know that sometimes I’m afraid to mention a flare or challenge because I don’t want my friends to get tired of hearing about it. I really try to avoid complaining. That’s why it means the world when someone texts, “Hey, how are you feeling, like for real??” because it’s an invitation to share a struggle or to celebrate a good day. This support is so important. Not only does it reduce stress (a main trigger) but it increases love and happiness (so healing!).
I’m sure I’ll talk more about chronic illness and pain in the future because it really is tied in with my anxiety journey so much. If you have a chronic illness, I see you. We’re in this together. And if you don’t, I hope this has helped you see what it’s like on our side and how you can be that amazing supportive friend. Either way, you’ve got this!