The need for patients’ perspectives to be validated
It was 3 years back when I walked to the office of a haematologist to get a letter of approval signed, that she saw my medical file bulging with monthly blood test reports and remarked – “Oh! All these tests are unnecessary. You are worrying unwantedly and you can live a normal life!”. It hurt me. I felt my journey towards healing and my feelings were invalidated and let me tell you why.
It was precisely for getting myself okay-ed for removing 6 of my teeth with my platelet counts at just 80000 per μl (normal range is 150000-450000 platelets per μl) that I had to get her consultation. I was just 30 years old then and within a year after being on a short term medication of high dosage corticosteroids, I end up losing most of my molars and premolars. It’s definitely in no way a sign of normal life and it’s at this point in time that I get to hear that remark.
You can read my detailed post on the side-effects of corticosteroids here:
Well, she might be right in her own way as she, as a haematologist, deals with hundreds of patients, day in and day out with cases where a patient’s platelet counts at times are literally at zero. But that doesn’t mean that an ITP warrior with decent platelet counts will have no problem at all in leading a normal life.
The problem here is doctors (not all) view it as a bleeding disorder while a patient gets to experience a myriad of symptoms including bleeding. It’s to bridge the gap between these two perspectives that there needs a lot of awareness posts on ITP, especially from the patient’s perspective and that’s what I’m doing here.
As I understand, the doctor might have meant a normal life as something where I can do things on my own, like breathing, moving, eating, or pooping. Well, in that sense I do have a normal life but my question is, can I survive doing just this and call it leading a normal life?
Waking up to sore legs and a fatigued body, finding clots and purpura over the body out of nowhere, losing a significant number of teeth at an early age, wondering what could be the possible trigger for one’s own immunity going against their body, what’s the way forward when medical science claims there is no cure and coping with the side effects of medications given to treat the symptoms- all these definitely doesn’t make life easier.
So it’s important for a medical practitioner to hear out what a patient is going through, without being judgmental. It’s important to be a healer first and then a doctor treating the ailment.
ITP is definitely not just about bleeding. It takes a toll on the mental and emotional health too along with the physical discomforts. Moreover, understanding the disorder, coming to terms with its symptoms, treatments, lifestyle changes that it demands, etc. will take time.
There needs a lot of inner work to be done too as much as it needs outer treatments. Acceptance takes time and it doesn’t help us in our journey towards healing if our feelings are invalidated right away. So, if you are a doctor or if you happen to be a part of an ITP warrior’s support system, make sure not to invalidate our journey in your efforts to share your expertise or express concern.
This post is a part of Blogchatter’s CauseAChatter.
Cheers to health & healing!
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