"... I thought I was losing my mind these past few years or becoming a hypochondriac because first my finger and hand were killing me and then my doctor said I was fine.. then my toe and foot pain became unbearable again doc said I was fine and then the never ending exhaustion had me thinking i was crazy--Always the doc made me think I was over exaggerating .."
Reading this, (I should say "again", because so many people have said similar things on this site) made me think "Yup, I've SO been there!". I was on the receiving end of that for years and years. My doctor was the same. Don't get me wrong, she is a sincerely nice person, I like her very much, and I've known her for a long time. But she blew me and my complaints off so much that I quit mentioning a lot of it. No point in asking about my toenail fungus again: she will shrug and give me a prescription that won't work. Again. Tell her I'm tired, she'll talk about hormones and say "Lose a bit of weight, maybe that will help". Mention the fact that I don't sleep well and I will get the set piece about exercise and sleep hygiene. Aching? Just take some ibuprofen and a warm bath. Sore feet? Good shoes and maybe some new orthotics. I knew all of her responses, and all of the remedies. And if the remedies didn't work, it was because I didn't lose weight, I didn't eat as well as I should, I didn't exercise enough, or I didn't do something else ... It actually got to the point that I believed -- I really believed -- that I was obsessive and exaggerating and a hypochondriac and that it was my own fault that I felt the wretched way that I did. Aches. Brain fog. Itinerant joint pain and swelling. Overweight. Depression. Insomnia. Joint replacements. I just needed to exercise more and eat better. Get good shoes. Lose some weight. Pace myself. Be perfect. And if I couldn't be perfect, well then, what did I expect ...
By the time I was diagnosed (15-20 years after symptom onset) the mentality that "it's my own fault" was deeply, deeply ingrained. Even now, I have to stop myself from thinking that I'm exaggerating, and that I'm the author of my own tragedy. Daily, I have to tell myself that I have a nasty, destructive disease, and it's not my fault. And despite the physical evidence, and the wonderful support of my team of medical professionals (my GP included) I still find myself slipping into self-blame.
I count that as part of the damage that PsA has wrought on me.
Seenie, thanks as always for posting about your experiences and thoughts. I find them so insightful, not to mention helpful in sorting my own, often confused, mind.
I also have a deeply ingrained 'it must be my fault' mentality. I've tried to work out where it came from, must be something back in my childhood. My mother had serious health problems so maybe my childhood concerns or illnesses were dismissed and it stems from this or maybe I was just born with the self-blame gene.
Having come away from yet another rheumy appointment last week feeling like I was exagerating, my disease isn't as bad as I think it is, etc etc I've spent a whole week with it all going round and round in my head on a constant loop of self doubt. Thinking I must, somehow, be sabotaging the effectiveness of my biologic and hijacking my own recovery. Rationally, I think know this must be rubbish, impossible even. But it's that little gremlin that tells me this is all my own fault, I'm the architect of my own ill health or it's all in my mind ..... he's got a very loud voice.
I've looked, searched and researched high and low ....... this 'symptom' isn't recorded in any of the books as a manifestation of PsA so we need to fight, rebel, kicking and screaming, daily if needed until it is excluded from our mindsets .... otherwise you need to have a quiet word in the ear of your rheumy and have 'the facts' updated!!!!!!!!!!!
Great post, Seenie. I think we're often quick to excuse our symptoms as something other than what they are. And Sybil's right. Too often women get treated less-than-seriously for their complaints. 'Cos, you know. Womynz. They can be so naggy and complainy.
We also know, janeatiu that women attribute problems and failures to themselves. Successes and positive things, on the other hand, are attributed to external factors. But you are right. I can be naggy and complainy. LOL
Thank you for posting this.I feel this way often. My doctor made me feel I was be a hypochondriac too. I still wonder sometimes if it is all in "my brain" or psychosomatic. Although I hate that other people have this same problem, it helps me feel better to know that I am not alone!
So well put. I think back on all of the visits to the ER with the pain from what I now know was chostochondritis. The feeling when they look at you like you are a crazy person or attention seeker. The late nights crying myself to sleep wondering what was with me. I actually wrote a letter to my daughter and put it with my will, that if something should happen to me just know that I am in a better plan, free from the pain and suffering. The utter despair at ties was so overwhelming. I knew I wasn’t crazy but no one else seemed to. At one point during it all, I had some kind of a neurological attack and lost me ability to get around. Still no answers, I went to the university hospital in Gainesville Fl. I had a neurologist that was about 80 yrs old screaming at me why couldn’t I walk. What was wrong with me and telling my sister that she needed to get me moving. I left in tears. After several more doctors I finally found an ENT doctor that was the most wonderful man in the world. He ran vestibular tests which came back abnormal. There was definitely a problem. I was sent to rehab facility for evaluation. It was determined that my brain had lost it’s ability to get around in space. I went through weeks of rehab retraining my brain to get around by following objects as I walked and was finally able to leave there using a cane only when I felt nervous about falling. I her not have faith in many doctor’s when it comes to autoimmune diseases, they just do not have a clue. Had it not been for my persistence that there was something really wrong at that point in my life, I may never have walked again. The struggle continues today and I am ever cautious around doctors. Our lives are a series of uphill battles anyway and then we pile this on top and it is at overwhelming. Right now I am contemplating finding a new GP, he is never thee anymore and. I have been seeing the PA. I am still battling a month long respiratory infection/bronchitis and then I got a stomach virus on top of it that has lasted 5 days. I have been in three times and I felt like he was wondering why I was back again. I can tell when my body is really sick and is not fighting something off like it needs to be. He refused to run any labs, did not do a chest X-ray or anything. I just don’t think they realize how quickly we can go downhill. I am off my Methotrexate and Humira until I am completely over these infections, which I don’t think they realize compounds the situation. That’s my beef for today! lol
Sorry for all of the typos! I need an editor!
It’s all so clear, thinking back, isn’t it? My doc’s most memorable pronouncement was “You need to quit worrying so much.” Of course, I went away thinking that I was neurotic as well as crazy. What I was worrying about then is precisely what has now happened to me now.
Do find yourself a new GP. With a chronic illness as tricky as ours, you need the best help that you can get.
I will be looking on Monday for a new GP. I have to see who is in my network of course! I don’t know about you, but I really do hate going to new doctors. It’s like, ok here I go with the spiels gain. Watch the face for any type of reaction!
I always loved the " do feel depressed?". Heck yes I feel depressed that nobody listens to me!
Seenie, sometimes when I read your posts, I think it is mine. My GP, though I think he is a great doctor, he always had a reason for my pain. It wasn't until I went to him with bruised joints that he realized something was really wrong and sent me to a rheumy - who diagnosed me on my first visit. I blamed myself for so many years, thinking I was lazy because I couldn't keep an exercise regimine for more than 3 days (too much pain). When things have always been that way, what is 'normal' for you and you body is not 'normal' for the rest of the world, but you don't know that.
“Like” button for this thread. (I’m on my phone and it doesn’t have that option). I can so relate to this conversation). Don’t even want to go back to my GP again bc of the bs I went thru to finally get treated.
I’m pretty assertive. My last conversation with my old GP actually went:
“Do you think you’re depressed?”
“No, I’ve been depressed before, and I’m not depressed now. But I might be BECOMING depressed, because there is something WRONG with me and I need your help to find out what it is”.
“We could try you on Amitriptyline…”
I think she was relieved when she discovered I had moved house out of her area. For me, that move was life-changing: I had a new hip within months…
Deja vu again!
I WAS depressed, so my symptoms could all be written off to that.