Health · Mental health

Bittersweet Appointments and my OCD

I had an appointment this afternoon with my rheumatologist, and it was a bittersweet one. Although I got some answers, I left feeling like I’ve hit a wall, and my OCD is creeping in.

I came to him with questions about EDS, AS, and costochondritis. I was able to get a hypermobility diagnosis, so I’m quite happy about that. However, he doesn’t think it’s EDS. He did mention genetic testing, but he explained that treatment for EDS happens for the hypermobility side of things and not much else. I brought up my back pain, iritis, and AS suspicions around the same time he mentioned Ankylosing Spondylitis. He looked back in my records and noticed I tested negative for one of the genes a few years ago. Since this particular gene is either always negative or always positive, he doesn’t think I could have Ankylosing Spondylitis. He found it concerning that I had costochondritis and said I shouldn’t be having that. Then, he started the discussion about getting back on Plaquenil.

I’d been on it for years and stopped around five years ago because I didn’t notice any difference in my symptoms, either for the good or the bad. There was and has been no change in anything since I’ve been off Plaquenil. I don’t mind getting back on it to humor him, but I know it’s not a contributing factor to my pain and fatigue levels. Given our conversation hours ago, I’m still questioning myself and whether I’m the reason why my pain and fatigue is what it is. It’s not always debilitating, but it’s definitely an inconvenience. There are days, like today, where I’m exhausted or in a fair amount of pain. Usually, it occurs for a day or two after a day when I’ve done more than usual, if I’m close to my period, and sometimes it’s just random–but chronic illnesses are like this and I expect the pain. My internalized ableism mixes with that tiny ounce of self-doubt and my OCD just latches on and runs with it.

My head rushes with intrusive thoughts like Obviously, it’s my own fault I’m in pain. Of course, I’m not doing enough. Despite the evidence and my gut instinct, of course, the fact that I stopped Plaquenil is why I’m in pain and it’s my own fault I’m in pain because I foolishly stopped it because I thought it wasn’t doing anything, which it wasn’t, but how can I be sure? I’m not disabled, people have it much worse. I’m being lazy and obviously, there’s nothing wrong…

It’s awful, and my head still won’t stop ruminating about everything. He offered what he usually does in each of my appointments: physical therapy/aquatic therapy and a sleep study to rule out sleep apnea and other ‘fixable’ causes of my fatigue. By this point in the appointment, I’m feeling how I usually feel: close to tears and disheartened. I agreed to find out how much both will be with this new high deductible insurance and to make a final decision later depending on the cost. I barely felt like handing over the paperwork I brought for him to fill out for my insurance company to hopefully lower the deductible because of my disability. I left feeling full of self-doubt.

I have fibromyalgia, I’m hypermobile but don’t have EDS (I suppose?), I can’t have AS because the gene is negative, and my fatigue and costochondritis? I shouldn’t be having those issues the way I am. I feel like I’m blowing my feelings about the appointment out of proportion, along with my symptoms, and I know my OCD isn’t helping with those doubts.

I feel incredibly down and saddened and like it’s my own fault. Despite having a healthy diet, exercising gently 5-7 days a week, stretching and doing the typical “right things”, it’s evidently not enough. I know what I feel is real, but I left feeling as though it’s in my head or at least my own fault. The pain isn’t, the hypermobility isn’t, but everything else seems to be due to my own errors. My compulsion for perfectionism reminds me that I’m not making myself strong enough or healthy enough and I could do more, when I know I’m doing more than enough and I’m doing everything I can.

I’m going to spend the rest of the day being kind to myself. I owe myself that much. I’m going to try to forget the bitter of this appointment and focus on the sweet. Maybe tomorrow, this appointment will feel less frustrating and more positive.

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4 thoughts on “Bittersweet Appointments and my OCD

  1. I had a doctor visit very similar to the one you described recently. The visit wasn’t so bad, but afterwards, I spiraled out of control with the thoughts of this being my fault. It seems to happen every time I have an encounter with the docs. They want me to start Plaquenil also. I’m waiting til I can get my eye exam first, which requires a phone call to the insurance to see if it is covered, blah blah blah. I was recently diagnosed with EDS and I have Sjogren’s. Recently the symptoms have been intense and nothing helps. I have costochondritis also and OCD to boot! Sounds like we are genetically related. I’m glad you are being kind to yourself. This is my plan as well. I’ve been looking into sacroiliac dysfunction as a contributor to my pain. I also have the bone numbing fatigue. Prednisone helps with the pain and immobility of stuck muscles but it makes me agitated and rageful. Anyhow, thanks for sharing this post and I hope both of us feel better sometime soon… take care.

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  2. I had the same weird “you are hypermobile, but not EDS” my my first time. It took a year, further joint injuries, and a separate dysautonomia diagnosis first before I FINALLY got the full diagnosis.

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