I wanted to write this as I know a lot of you feel frustration with medical professionals, and can be left feeling totally done and wiped out. It’s a place I’ve been before, numerous times, myself. It’s a place I’ve been in recently. I think many of us will sadly be able to nod along. I think hitting that wall is an important stage to address in advocating for our own health because things often don’t go smoothly the way we’d hope.
Patients all too often have to fight for their health during GP visits, hospital trips and specialist appointments. This is perhaps more so the case with invisible illness as its subject to greater uncertainty and scepticism.
We fight to be heard and to be taken seriously. To be adequately diagnosed and appropriately treated. The wall hits us when lots of small frustrations build up, or significant issues arise. It could be a variety of things:
Being fobbed off or discharged from care without answers or help. Receiving insulting comments or ridiculous, even damaging, ‘advice’. Referrals and test results being lost. Diagnoses being given or retracted or not made at all based on narrow-minded criteria. Red tape preventing adequate treatment.No help given by narrow-minded doctors who don’t seem to listen to what you’re saying.
The list is endless. The result, potentially devastating to our mental illness and stress levels, not to mention our physical health.
So, what happens when we hit a hit a wall and what can you do?
Step 1 : Rant. Vent. Excessive use of expletives not discouraged.
Step 2 : Anger and frustration gives way to exhaustion, feelings of hopelessness. Saying “I’m done” and vowing to never go to a medical professional ever again. Feeling that you don’t want to keep playing this stupid game any more, thank you very much. You’re shattered and reality kicks in that you need a break.
Experience these stages. They’re important. Feel whatever you feel, because we’re all entitled to our own feelings and ways of dealing with things. It’s okay to not be okay. Give yourself some time out; get enough rest, do something enjoyable, get a change of scenery or distract your brain with Netflix, art, reading, knitting, whatever works.
These steps should be satisfactorily wallowed in but not for too long. You’re not giving up yet.
Step 3 : Lift your head up. Dig deep and find your resolve. It’s there. It’s just hiding. When you’re ready, dust it off because you’re not done yet.
Step 4 : Take a step back to look at what’s happened more objectively, see what needs to be done, what’s missing and what possible options there are…
⤐ Can you be referred to another specialist, speak to a different doctor, or ask for a second opinion?
⤐ If there’s been a significant breach of care, should this be reported? Could it affect other patients, and will you regret not speaking up? This can usually be done formally or informally, such as to the GP surgery’s Practice Manager or the hospital’s Director.
⤐ Are there local charities you can contact for assistance or advocacy support? The Patient advice and liaison service (PALS) may be worth contacting for a chat as they can offer advice and support on health-related issues. You can find out more via the NHS website here.
⤐ Get your ducks in a row. If you’re fighting to be heard when it comes to getting a diagnosis, treatment or further help, get organised. List your symptoms, make a note of what you’ve already tried or explored, jot down possible things to be looked at. What is it you’d like the doctor/specialist to consider? Brush up on your knowledge and arm yourself with information so you know what your argument is and what to ask for.
⤐ If you find yourself struggling with appointments, especially when being fobbed off, you may want to work on being more assertive, which I’ve posted a few tips on previously. It’s also worth considering whether enlisting some backup, maybe a friend or family member, could be useful for moral support during your next appointment.
⤐ There is a slight caveat here: Know the line between searching for answers and when there perhaps aren’t any. There may come a time with certain issues where there are no suitable, adequate answers, at least for now, and that’s when we need to swallow the bitter pill of having to accept that. It can take time to figure out whether this applies to your situation or not; reach out and speak to others, you don’t have to go through this alone.
⤐ Can your GP/specialist be educated a little? They’re only human and they don’t know everything, and some can be willing to listen and learn. Get some facts from reputable online sources or other trustworthy medical resources to present to them. Sadly, not all doctors are open-minded and there will be cases where you’ll be wasting your time trying to get them to see new information, thoughts that are different to their own or anything that involves thinking outside of the tiny box.
- You know your body & how you feel better than anyone else. Trust that; if something isn’t right, persevere and be your own advocate.
- You have dealt with enough struggles in the past and you’ll deal with the current ones you’re facing. You’ve haven’t got this far to give up.
- Doctors, surgeons and specialists are only human and they can have their bad days, their errors in judgements and their mistakes, too. If it’s not a one off and they’re just ignorant, that’s their problem, but it shouldn’t stop you from getting the help you deserve.
- Medical professionals have a duty of care and you should expect to be treated with fairly and with respect.
- There are always other avenues to explore, other things to try, doctors out there who will listen.
- Your health and your life are worth fighting for.
How do you deal when you hit a brick wall & feel exhausted with it all?