Does anybody find lack of understanding difficult?

Hi all,

I'm new here. I've just been given a working dignosis of Vasculitis from a skin biposy but they think they will be refining my diagnosed to Behcet's Disease. So far it seems to be affecting my skin - several rashes, lungs - waiting on biopsy, mouth with severe multiple ulcers, possibly nerves - I have numbness and tingling in my arms and legs and I've had Bells Palsy four times so far in five months, joints and muscles with severe pains and stiffness, my bowel has also been damaged but they don't know if it's from the vasculitis, the optic nerve in my right eye is thinner then it should be - I don't really understand this and I'm waiting on further tests. In the past I've also had periods where I would collapse and have seizure like shakes but I would be awake. At the time they thought it was MS but they couldn't find anything on the tests so they wouldn't persue it any further. I also have crippling headaches about three times a day. I've been very sick since November but many of the symptoms have been going on for about 20 years - I'm only 32.

What I'm finding the most difficult to deal with is that now it's been confirmed that I'm actually sick and it's not just in my head my family and my husband especially doesn't seem to be very concerned. It's like they just expect me to carry on as I did before. I've even had people say well now you're not just a hypochondriac and I'm constantly told "if you were a horse we'd shoot you". I know that they don't mean it but I feel like my illness is being belittled. I know they wouldn't say this to somebody diagnosed with Cancer.

Does anybody else feel like this or have any tips on how to deal with it?


12 Replies

  • Hi Mandy,

    Welcome to the group.

    Sadly what you're experiencing is not uncommon. Vasculitis can be an invisible disease and even close family members can fail to see it or even not want to see it. The rarity doesn't help and the fact that so few people have even heard of it can be a problem.

    We do have a bit about this on our website, here :

    But I admit it's not got many answers for you.

    The way I've tried to deal with it is to learn and understand as much as I can about my particular type of Vasculitis and then slowly feed some of that information out to my friends and family when they're prepared to listen.

    Sorry I can't offer much more in the way of help.

    All the best,


  • Welcome to the group, Mandy! You sound to have given a plateful of nasty symptoms to deal with, I am glad that you have just about got a firm diagnosis, Behcets is a rare form of vasculitis but it is treated in much the same way as most of the other systemic vasculitides. Once you ahve the correct medication, you should see a big improvement in your symptoms.

    Re your family's response which no doubt seems uncaring. I think the reason they sem to expect you to carry on as normal is that they are afraid. Afraid of the responsibility of caring for you, and afraid because this disease doesn't go away, so there are implications for long term caring. I think they just need information and reassurance. Does your husband come with you to your hospital appointments? Perhaps the consultant could talk to him, and answer his questions? Perhaps you could ask him how your condition is affecting him, and has he any worries about it?

    Other people's response is predictable, too. When I was diagnosed, my mother, after asking what the disease was called for the third time, said, 'Trust you to get something nobody has ever heard of!'. I am sure people do not mean to sound unsympathetic, but they do! Later, things usually improve as they get used to the idea and see how capable you still are most of the time!

    Good luck!


  • Hi

    Firtly, welcome to the site. :)

    Secondly, as the above.comments have said it is quite common for silly comments to be said but since last.weeks episode of "24 Hours in A&E" I have noticed a distinct change in peoples behaviour regarding vasculitis as a whole. A young man attended with was definitely an eye opener. Maybe you could.get your family and husband to watch it on catch up.

    I know it helped those around me have a little more understanding.

    Good luck.

  • HI,

    I am lucky to have a loving and understanding husband, the people I find difficult are those around me, such as at my son's school who see the marks on my skin and tell me to get my house treated then the fleas won't bite.or the comments as some days I'll walk, even jog, along happily but then others I have to use a stick because of the pain, this causes some odd looks and comments.

    I spoke to the headteacher at my son's school as he was being affected by the comments, and explained to her what was being said and she was very understanding and has helped with educating the children and I spoke to a couple of parents and let it permeate the group, I still get looked at oddly by some but rise above it.

    Over caring is a complication too, as my mum-in-law is constantly 'are you ok?' then when I say 'yes' it is always 'are you sure?' this can be just as infuriating. I just want to be left alone, treated as anyone else and ask for help if and when I need it, but that's just me, I hate fuss and like to keep myself to myself and my husband respects that, he knows that if I can't do something or if I'm depressed or in pain I often won't say it but he will pick up on the way I behave and acts accordingly, everyone is different and not everyone has the ability to read the other person to see and pick up on the small changes.

    People are naturally fearful of the unknown and sometimes can seem uncaring by their comments when it can be their coping strategies, making jokes can be hurtful when really they are made to lighten the mood and fill silences, hide embarassment or the feeling of insecurity and the inability to understand and the feeling of being helpless.

    I think getting the family to watch the episode of 24 hours in A&E is a great one. Also taking your husband to the consultation with you so that he can hear what the cureent prognosis is and where it might lead; just hearing you answer the questions the consultant puts to you with give him knowledge of how you are.

    We are all afraid at times and that's natural, talking about our fears is important, as much for the carers and families as for the individuals with the conditions. Take time out to sit down and talk; perhaps, if he hasn't been to a consult with you yet, use the sit down and chat as the way to invite him.

    I'm relatively new too and am finding my way through as best I can and have found this site invaluable, many thanks go to all the contributors, I'm sure you will too.

    Welcome to the group and good luck.

  • Thanks for all the tips. My husband has been to some of the consultations with me and my dad to others. To be honnest we're not getting any answers from the consultant. He just keeps saying it's a mystery, that i'm not following the patters exactly but from what I've read there are no patters for Behcet's or even for systemic vasculitis. I've been trying to watch the episode of 24 hours in A&E but my broadband is so slow it won't work. I must try to use my dad's. I've had people say as well "you'll be out walking with the baby in a week or two when the drugs kick in" as well so I know how annoying it is. It feels like they're dismissing the illness because they don't understand it.

    I don't see my consultant very often as it costs me €130 per visit and I'm only bringing in €202 a week. I just can't afford to go very often so he's trying to keep the visits to a minimum for me. I'm still being seen by an Internal Med consultant. I've seen two of these, an opthamologist and a dermatolagist but no neurologist or rheumatologist. I'm being referred to a public immunolagist but I don't know how long that will take. When I was investigated years ago it took almost 3 years to see a neurologist even though they thought I had MS at age 19. The public healthcare system really is dreadful in Ireland.

    I think if we were getting more answers then my husband might be able to deal with it better. He's diabetic and he keeps comaring the disease to diabetes. This really frustrates me as it's nothing like diabetes, he can control his blood sugars by eating the right things and taking the medication, I can't control anything about this disease.

    I don't even have a follow up appointment for my consultant so I don't know when I'll be seeing him again. I'm waiting for the results from a lung biopsy which was done last week.

    It's so frustrating that it takes so long to diagnose this disease and then even when it's diagnosed it still takes so long to get answers. I've had all sorts of tests so at least we know there's no major damage done to any of my organs yet by the disease. I've had blood tests, MRI's, MRA's, MRV's, eye tests and scans, Evoked Response Tests on my eyes, CAT scans of the brain, spine, chest and abdomen, colonoscopy, skin and lung biopsy's and x-rays. Pretty much everything is showing clear except the skin biopsy but I've read that if it's the small blood vessels that are affected it won't show up as the resolution is not high enough to show them. Is this correct? It's great to know that there's no damage done yet but I think that's making my family think that it means there's nothing wrong.

    I'm sorry if this sounds like a big moan, I'm not usually a moaner but I'm just very frustrated and quite scared. I hate not having answers. I feel like I could cope with anything once I knew what it was, I hate not knowing.

  • Moan away my new friend. Expense is something that is rarely understood by people who don't need to count the money coming in. My daughter had over 200 appointments in a 12 month period and that was just to get a diagnosis. She is fed up with it all and, to be honest, I understand that. Don't give up hope. Eventually the family will come around. We are having the same problem too.

  • i agree people think that u are alright my friends ask how I am but don't realy under stand I have good days and bad days at the moment having bad day s my legs and feet don't belong to me having cramps in hands and legs got blotchs on right foot does any one else have these and also I feel I am on my own because people don't understand this illness

  • Lack of understanding is so common worldwide. Even family members don't understand. They pass it off as a stage and don't really want to know that it is life long. My daughter has vasculitis. I have been scouring the net to see if I can find more information on Systemic Vasculitis and come up almost empty. I see the results of it. The frustration and the pain she goes through. And I CANT HELP HER. We live fairly close to each other fortunately, so it only takes 7 minutes in the car to get to her. It never seems enough. I ring her. Email her. Leave notes on her facebook page. Visit 2x a week. But I still feel completely useless. I just want to 'fix' it and I can't.

  • I think we all understand the frustration of waiting for results diagnosis an d treatments. Often people will comment on how well i look when i am feeling foul. As the majority of my wg showed in my eyes The consultatnt will tell me how well i look. But then advises me to give up work as I am to ill I have had increasing breathing problems and I am now awaiting an appointment with a thoracic specialist. No straight forward line of prognosis treatment or outcome just adds to frustration Chin up and let rip when you need to we are all in the same boat

  • Dear mandyf,

    Not much that I can add, to the above, except, as has been said above, welcome to the site and sorry to hear that you are suffering. Hopefully now that you have been diagnosed things will improve for you. At the very least you have 'something wrong' that is recognised, so you can 'prove' you are not imagining it!

    As has been said above; yes some people will just keep asking 'are you alright'- my mother does, at least three times, during my dialysis sections. Mostly these people do mean well- no matter how many times that you tell them 'if anything is wrong I would say honest'. You will need to stay strong, I'm sure you are able to do this, and fight your corner, on occasion- however with the right treatment and care hopefully you will 'get better'.

    I will pray for you; I don't know your religious beliefs but it can't d any harm can it?


  • Hi Mandy, Vasculitis UK does have a leaflet - "Understanding Vasculitis" - which is written specially for giving to family, friend, employers & work colleagues to help them understand the illness and the problems associated with it. If you send me a private message with your address I can send some to you. Perhaps you could also tell me where you are treated.

    There is a new All Ireland vasculitis support group.


  • Thanks all, it's a great help just to fell like you're not the only one suffering even though we're all suffering in different ways. I'll forward through my address as I think the leaflets could be a godsend. I'm being treated so far in a private hospital in Dublin Ireland - about 50 miles from where I live. I've been attending an internal med consultant Muhammad Rizwan Uddin in the Hermitage Medical Clinic. He has been fantastic and has had all the tests immaginable done. He was very good in that he had me admitted to have most of the tests and see the other consultants so i only paid one excess on my health insurance instead of one per test. So far everything is clear except the biopsy of the skin. I've just got word that my lung biopsy is clear. It's a relief when the tests come back clear but it still leaves me frustrated as I know there is something wrong. I developed Bell's Palsy again yesterday - that's now five times since the end of January. I was told today that 8 consultants had a meeting about me today and couldn't come to any conclusions. I've been started on Imuran and now I'm back on the prednisolone for the bell's plasy. Every time I'm off the prednisolone for about a week it comes back. The consultant gave me the name of a drug today that he may need to add in but it didn't mean anything to me - it began with c but that's all I can remember. I've also been put on an anti-inflamitory for the joint pain which seems much better tonight.

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