Vasculitis – if I Knew then what I know now by Graham Baker

Most of us suffering with vasculitis experience a very difficult time just getting diagnosed. The weird mix of symptoms, combined with the rarity of the condition, seems to make many visits to our GPs and local specialists inevitable. Knowing in our own minds that we have something seriously wrong with us, but in the absence of confirmation and clarification from the medical world, is not a great situation to be in.

Many of us will spend hours scouring the internet, researching various obscure diseases and conditions. We will learn some things that are helpful, and lots that is not. (I was convinced I had mercury poisoning – I did manage to convince my doctor to test it – I don’t have mercury poisoning but my GP became even more convinced that I’m a time-waster!) We may even narrow down our search to vasculitis and help achieve our own diagnosis.  Although diagnosis brings some relief, the issues we then need to address have their own challenges. We will need to undergo lots of tests and investigations to pin down the specific diagnosis and optimum treatment, as well as ongoing monitoring to track progress.  We will become familiar with the issues of steroids and other drugs and their side effects, with flares and remissions, and with other mysterious symptoms which might be Vasculitis, or a side effect or completely unrelated. And in amongst all that we will be dealing with the issue of how we talk about it all with friends and family. It is undoubtedly a very trying time for everyone involved, and I think we owe it to ourselves to make things as easy as possible.

Each of us will deal with all of this in our own way, and in truth we need to. There is no ‘right’ way, and it would not be appropriate to try to impose ‘best practice’ on others. But I’m pretty sure that with the benefit of hindsight, most of us would have done some things differently at the beginning if we’d known then what we know now.  I’ve been thinking about what I would do if I were starting over, and I hoped that by sharing my thoughts it might just help others closer to the start of their journey.  I’m still fairly new to the whole thing though, so I’m more than willing for others to add or modify suggestions based on the greater experience.

Getting diagnosed.
Be persistent. You may feel like your GP is not taking you seriously, or thinks you are a hypochondriac. Remember that no-one else will push for you as hard as you can push for yourself, and you have a right to be as well as you can be.  If you have endured many visits to your GP practice with multiple symptoms over a period of time (and as in my case seen numerous GPs based in the practice) insist that you sit down with one GP and review ALL your past and present symptoms together. That was crucial in my case progressing. Before that meeting, put together a printed list of your symptoms with relevant dates, treatments and results.  I say printed because you will be asked about your history many times in the months ahead, and it can be easy to overlook things.

Use the review meeting with your GP to refine that list, including details of any prescriptions issued.  Don’t make an enemy of your GP:- the rarity of vasculitis means most have never been exposed to it outside a textbook. You may need to help them understand.

Understanding your condition – DIY Research.
Whether you are looking for a diagnosis or gathering more information after diagnosis, please approach the internet with care and an open mind.
Symptom checkers are out there, but be prepared to explore some blind alleys.  Some sites are very factual but a little cold and impersonal and quite grim; some warm and supportive but perhaps a little over-protective. Some are run by pharmaceutical companies looking to sell you solutions and some by people who believe in alien abduction. In amongst these are one or two sites run by people who know the condition and its issues at first hand, either as sufferers or carers. If you’ve found this article, then you have already found at least one of them.
Collect the information you find useful, but check it out on other sites to help verification and your understanding. Summarise the parts you feel help you understand your condition and support your diagnosis.  Pull these together into one document and print them out (ideally on one sheet and list the sources if you can too) If you are still searching for a diagnosis then share the list with your GP.

Highlight issues you don’t understand or which worry you, and put them in a list to take with you to your next consultation. Knowing they are written down means you wont need to keep them active in the forefront of your mind.  If you’re part of one of the excellent support groups, ask them. Sufferers and carers can probably be even more helpful than your GP.

Referral
When you do manage to get referred, make sure you take all key documents with you:-

  • list of current medication
  • your symptoms lists
  • your questions
  • copies of GP letters and referral letters

(I have a ring binder I update religiously and take with me to every meeting and consultation, and which is still referred to regularly)

Take a note pad and pen and record key things discussed.  As hard as I try to hear everything that’s said, a combination of ‘too much information’ and my hearing loss means I always miss something. My wife comes with me when she can, which is a great help, but even so I suggest a notebook too.

I type up my notes after each meeting, while things are fresh in my mind, and include as much detail as I can:-

  • Which consultant / registrar I saw.
  • What we discussed.
  • Treatment plan and next steps.
  • Tests done on the day and any results announced.
  • Any issues.
  • Any actions planned before next clinic.

Take your notes to every meeting. Check off any issues outstanding from the last visit. Between clinics, make notes of changes to your symptoms to share next visit.

Your treatment

Don’t be afraid to ask about the drugs that are being recommended for you. Make sure you take advice on diet and lifestyle changes that may help. Find out if there are any symptoms you need to be particularly sensitive to, and what you should do or who you should contact if they occur.

I can’t add much more to this section – my treatment is just beginning – so I hope others can add their tips.

Friends and family

They are sometimes the forgotten sufferers. Thinking about how you tell your family and friends what’s going on is probably the most likely issue to cause different reactions amongst sufferers.

Some people would prefer to keep their illness private, and will relay as little as possible to others, whilst others (like me) generated an email and circulated it to those close to me – summarising my condition, focussing on the positives, and inviting any of them to ask me anything they wanted to know. Doing it by email meant I knew I’d told them all the same thing to start with – although of course we’ve spoken individually since. My decision was to be as honest as possible, but not to let them or me focus on worst case scenarios.  As I say, some of the web sites paint a bleaker picture than is necessary, and left to their own devices to find out more, they would be exposed to that without the benefit of objective feedback from consultants based on my individual circumstances.

I let everyone know when I’m visiting the clinic or having treatment, but without making it an ‘announcement’. I accept their offers of help, gratefully and gracefully, when I need it. They share my frustration with the illness and their inability to influence it. They want to help, and if I genuinely need help then I want them to help too.

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