Recently I was watching an old documentary about Chronic Faitgue, featuring the golden girls. And in it they describe it how original a doctor can understand a patient is ill, and be confident of a diagnosis and then the tests come back negative, and they get frustrated with not having the answers, that they project it on to there patients. This struck a cord with me as this happened this week to me, I just was confused by the ordeal so let me explain what happened.
My stomach has been getting worse recently, and then I started throwing up and get stabbing pain after eating again so I went to urgent treatment. Met a very kind doctor, who checked me over, and ordered some bloods as she was worried about how many bruising I had on my legs, and my leg pain and she said I looked unwell. Well 2 hours later my bloods came back all normal, except for some slightly raised liver function tests which have been on a slow increase in the last month, but apparently no cause for concern..
She called me in, and said she doesn’t think I have anything like IBD or anything even though my stool sample indicates it as my CRP is normal, she just thinks its IBS. I then said look Im not even sure if this pain is to do with this or something else, but have been told that my crp might not reflect the inflammation going on in my body. She did not dispute this at all, she just looked visibly frustrated that there is not more she can do for me and said my bloods are better than hers and she cant give me the answers I am looking for. She then perceeded to tell me my black stool is just my multivitamin and nothing to worry about. Tieing it all up in a neat package of stress related IBS and sending me on my way.
I am used to this, this isn’t my first time meeting a dismissive doctor, and to be fair she wasn’t mean, she just was stressed, overworked and to be fair there probably is little she could do. But what struck me was why had she original believed me? And then didn’t? and looked at me like I was some inconvenience.
And that is when I came across this documentary clip on my tiktok. The fatigue I experience is quite similar to ME, I think in fact I would be diagnosed with ME, if I didn’t have physical eveidnece of joint swelling, rashs, and a positive stool sample for inflammation, and low blood sugars. I also don’t experience fatigue as deliberating as someone with ME does, I have times of a baseline level of fatigue, which just feels like I have woken up hangover after 10 mins of sleep and drinking my bodyweight of alcohol. And then I have flare ups, where my joints feeling like someone is drilling through me, my muscles ache, and my body feels limp like I have weights pulling me to the ground, and even sitting up feels like a lot of effort. But yet I find the only time doctors every care is when I have evidence on tests. And I understand this from a clinical perspective, but as a patient sometimes I care more about my quality of life and my symptoms.
I think its almost like this no mans land of support. Where you are not well, but not unwell enough clinical for doctors to care or do anything about. And I suppose I wouldn’t even mind if a doctor would tell me they cant do much. But they are so dismissive about it, the attitude like you are wasting there time, when really you are in pain and ill and trying your best.
But I do have some wins, I had my second physio appointment. And the fact I got into physio so quickly after being told by the doctors there was no point referring me to physio as it takes so long. But then my rhemtologist referred me and I got an appointment 2 weeks later. I am also finally in the system, I have an endocringlogist appt next week to start my investigations in a hospital closer to home. I am also nearly finished this term of uni and have survived it. I am finally learning how to build an exercise routine I can actually do. Yes there is some things that I would like to build up to doing such as working again, horse riding again. But I have also done so much in my time at uni, I have been able to live independently, complete my uni work, make friends, clean my room. All which seem like little feats but are massive to me, as I was so worried I wouldn’t be able to do. And its been hard so hard, a lot of crying, having to go home as I don’t believe in myself, having low confidence in myself and my body.
I have recognised that, I have low trust in my body which causes anxiety. I get really anxious how my body will handle activities that sometimes I get worried about seeing people, going out and doing things as what if my body fails me, and every time it does it is super traumatic for me. So my goal for the next month is to set little goals to complete, and brainstorm ways to make them accesiible to me and remind myself if I have to leave early that’s totally okay. I think in the past I have had people react negatively for me having to leave early, or not go to things, or take to long to reply, that I get so worried about this. But gradually I am learning my health has to come first and I need to be surrounded by people that understand.
So yeah this was the last week, see you next week
Love Amy x
Amy, so sorry to read this. I do hope you can get some progress with your medical problems. I had chronic fatigue when I was a student and for some time afterwards. I think it was post viral, but I don't know when I had the virus...... Love to you and your mother, Barbara xxx