Chronic illness: How do you navigate ongoing medical trauma?

RJay43

I’ve been struggling with horrible chronic symptoms for years. I’m diagnosed with fibromyalgia (had to borrow money to go private for that) and now I’m deteriorating in so many frightening ways. The problem is, every time I gather enough spoons to speak to a GP, I get treated like a malingerer. The impatience and contempt is palpable. For years I was told I just needed to lose weight. I lost all the excess weight according to their bs bmi charts, then they started blaming it all on peri-menopause. They kept prescribing more and more exercise until the exercise made me MUCH more sick, possibly permanently. The last appointment was the last straw. I’ve never been treated so contemptuously by a GP in my life. There was absolutely no reason for it. I was already feeling emotionally fragile and it just broke me. I’m at the point where I’m terrified of doctors. Has anyone gotten over this point? I still need help but I know I can’t get it. What to do?

Rosie_Scope

It's a really difficult one @RJay43, I've had my fair share of medical trauma myself and it's not easy to get past it all. I'm really sorry you've been treated like a malingerer, the stress and injustice of that accusation can't be helping at all and it's awful you're having to fight so hard to get what you need.

Would it be an option to change doctors at all? I know that's not always possible but some surgeries are much better than others at helping with these sorts of conditions.

Is there anyone you trust that could come to appointments with you to help advocate for your needs? A trusted friend or family member might be able to help support you and get your point across in appointments without using up all your own much needed spoons.

Fibromyalgia UK have a helpline if you'd like to speak to someone who understands what it's like, they might have some extra tips:

FMA UK - FMA UK National Helpline

I hope our members might have some advice to share too. Hope you can find a way forward soon.

noonebelieves

https://forum.scope.org.uk/discussion/132497/chronic-illness-how-do-you-navigate-ongoing-medical-trauma

Dear @RJay43,
I’m so sorry to hear the agony you’re going through. Your post truly touched my heart, and I wanted to share my own experience in the hope that something in it might be helpful to you.

When I began my journey with long-term health conditions, I went through a terrifying time. As my symptoms began affecting different systems, I would go to the GP one week with eye problems, then another time with numbness in my hands, followed by gastrointestinal issues, unexplained weight loss, and low blood pressure. I had a very negative experience-nothing I said was believed. I had access to my online records, and to my horror, I saw the word “malingering” written in them (exactly as I’ve typed it here). This is one of the reasons your post really resonated with me.

I felt crushed. I tried raising a complaint through the practice manager, who simply defended the GP. Eventually, I escalated it through the CCG and copied in the CQC. After some persistence, I managed to get that term redacted from my records. I was supported by an NHS complaints advocacy service called POhWER, who were incredibly helpful and stood by me throughout the process.

I also decided to switch GP surgeries altogether, as I feared being further stigmatised if I remained with the same practice.
At that time, I was working full-time in a very busy NHS service, and because of that negative experience, I delayed seeking help, even as my health declined. Eventually, everything came crashing down: I collapsed at work and had multiple hospital admissions. It turned out I was showing signs of adrenal insufficiency and had a crisis. Since then, my life has never been the same.I now live with multiple chronic conditions.

However, one positive change was having a new GP. While I wouldn’t say everything is perfect and I often have to chase up referrals and advocate for myself, I’ve never once been treated like a malingerer at the new practice. I truly believe that when living with long-term conditions, the relationship with our GP becomes critical. If that trust breaks down, it can feel impossible to move forward with your health issues.
In your case, where things have become so strained, you might want to consider either: 

 •   Asking to see a different GP within your current practice (if possible), or 

 •   Transferring to a completely new GP practice within your catchment area-as @Rosie_Scope also kindly suggested.

I know that making complaints or switching practices can feel daunting when you’re already emotionally and physically exhausted. But you’re not alone. Depending on your area, you may be able to access NHS complaints advocacy support. As I live in the West Midlands, I’ve personally used POhWER(as I mentioned above)and continue to use their help with concerns and complaints. They even offer support with mental health advocacy (such as IMHA and IMCA).

In addition, you may find supportive peer communities such as Fibromyalgia Action UK, as Rosie suggested, helpful for connecting with others who truly understand what you’re facing.
Above all, please know this: You are not alone, and you absolutely deserve to be treated with compassion and respect.

Sending you gentle thoughts and best wishes,