A question on behalf of someone else, asked this morning by email, a new member to Vasculitis UK

[John_Mills]

I have received an email this morning asking me about counselling. This person has been diagnosed for about a year and has received the sledge hammer treatment of infusions of cylophos and Prednisolone and is now on maintenance medication. The problems are ... :- finding it very difficult to come to terms with actually having Vasculitis themselves plus coping with the extended family and friends not understanding why he looks so well now. It would seem the family have gone from worrying so much about him at the beginning when he was so obviously unwell and in hospital to thinking he is fine now. His wife says the extended family do not see him taking his cocktail of drugs every day. They both want to know if counselling may help, I have experience of councelling many years ago but that was quite a different situation. I just thought I would ask has anyone found counselling helpful after they were diagnosed with Vasculitis and if so would the counsellor really have to be knowledgeable about vasculitis (rare diseases) to be able to help.

[BooBoo39 Volunteer]

Hi John, you don't say if the patient is still employed albeit probably on leave. If he still has a work connection HR can arrange a welfare officer who can initially help on different levels. One is to create a confidential space to off load fears , insecurities and issues. For this the counsellor does not need to be aware specifically of the illness. When i was first ill 2005 even before diagnosis i found this very useful . I don't know whether other sufferers are the same but hearing different accounts i believe we all try to shield those close to us even when we feel and fear the worst.Meeting with someone that we are not worried how they will react to what we say helps to address our own concerns.In turn making it easier to tackle issues outside. The second string to their bow is that again confidentially they can assist in completing and advising on claim/benefits we may be entitled to. Work and pensions always react more positively if the claim is completed by a professional 3rd party. My next biggest help comes from my neuropsychologist who was initially involved to assess my severe memory issues at the time. This involved psychological and physiological testing and fortnightly counselling to help me come to terms with my cns vasculitis and still available presently through my current flare. One of the biggest issues at the time was no one knew what vasculitis was especially friends and to some extent family. The biggest issue to onlookers after returning home from hospital was you look WELL when will you be back at work. They have no concept as you say of the level of meds daily just to keep us here, let alone take part in normal activities that others take for granted . To answer your initial question having used up to date and recent counselling it really did/does help to view things more objectively and give you the tools to address alot of issues raised by any form of vasculitis or longterm illness. But remember it is teaching us to carry on to the best of our abilities not bending under disabilities.

WE DON'T WANT PITY BUT EVERYONE NEEDS HELP SOMETIMES. JUST BECAUSE IT'S OK TO ACCEPT HELP DOES NOT MEAN WE ARE WEAK !!!

Hope this helps

Jo

[LynneJ Vasculitis UK Volunteer]

I can relate to this question. After my infusions,pred etc which took a year and I was told my consultant appointments would be every 6 months and blood tests every 2 months {on maintence now} the feeling of being alone was really scary.I felt safe when I knew I had appointments. I was and still am scared in case I have a flare and don't realise in time. I still get symptoms like I had when I was ill but I tell myself if they fade within a week it cannot be a flare {I hope I am right}.

I go for accupunture and because it is traditional and more holistic than treating just pain I talk thing over with my practitioner which I suppose is a form of counselling. It helps me.

I also have nothing to show for my illness. I look well and with painkillers can walk about as normal. {my thing is nerve damage) so no one can really tell. It has been a year now and only my very close friend and my sister ever mention it. I don't think it means the other people do not know or care just that we don't talk about it. As we are retired I have the luxury of having a tired day if I need it. When I do things I look back and think how much worse I felt last year and how much I have slowly improved.

I think(for me) it does help not to keep being reminded of it.

Sorry if I went off the subject but having said all that, this site has helped me come to terms. it answers questions we don't like to bother people with or that doctors just dismiss. I find it is like having had a chat with someone without doing so. By looking back through the questions I found a lot of things I wanted to know.

[vivdunstan Volunteer]

I tried counselling a few years ago. I never had a problem needing counselling soon after diagnosis - I'd been seriously ill for 3 years, misdiagnosed with ME (a misdiagnosis like this is very common for cerebral vasculitis) deteriorating hugely, and was just mighty relieved to have the correct diagnosis and proper life-saving treatment at long last. However I needed counselling in early 2007, as I was going through a particularly bleak patch, and struggling to cope.

As a postgraduate student I could get free counselling through the local university. I tried this. It was not successful, primarily, I think, because the counsellors could not understand the horror of the disease, and the potential dire situation I was facing. They were not medical counsellors, and seemed to react to me as badly as some other people can, who just nod and smile, and say "Gosh, you are looking well today!". I tried two different counsellors available, but had the same problem with both, and abandoned it.

Instead I went to see the university chaplain, which was a big step because I'm agnostic! However we defined our boundaries, and she was the only counsellor type person who was able to relate to the life and death situation I was facing, take on board my explanation about the disease, and provide a valuable non-family sounding board for me.

I wouldn't recommend that everyone goes to hunt out a cleric! However if you do have counselling I think it's probably important to have a counsellor who is used to dealing with medical patients, who may therefore have a better understanding of invisible and difficult conditions. Perhaps the GP could recommend a counsellor in this case? It's also a consideration whether counselling is free or would be paid for. I was lucky to get it free through my university, though often people have to pay.

As for the wider family, I'm afraid this is a huge problem, and one where more education is needed. However it's probably unlikely to change much in the short term. The only person who really understands how I struggle with my disease is my husband, who sees me day in and day out (at least when not away at work). He sees how much I am affected, and how much the simplest activities take out of me. For years my parents, who live away from us, found it much harder to understand, and would say the "You are looking well!" comments. They didn't see the range of symptoms, or the affect that things had on me. They have a much better understanding now. That took a long time.

Given this it's important to clarify the purpose of counselling. If it helps the patient come to terms with diagnosis it is well worth it. And if it helps them deal with relatives and friends who don't understand, and may still not understand for some time, it is valuable too. But it won't change the attitudes of those relatives and friends. For that some strategy is needed. Perhaps to say as little as possible about the disease, and not expect them to understand - yet.

[Nadine99]

My husband has WG and struggles with the 'you look well' bit!! I don't know whether conselling would help, luckily he uses me to sound out on, but for the family comprehension, I printed out a little bit from an NHS website which I showed family & friends. It seemed to make them understand that there was a problem that they couldn't see.

[John_Mills Volunteer]

Thank you for all your very helpful replies. will now be able to help this couple make an informed decision themselves. If anyone does want any information leaflets to share with family, friends or work colleagues,John has written an excellent leaflet explaining in laymans terms what Vasculitis is and how it affects people.

[hamble99b Volunteer in reply to John_Mills]

yes please to the leaflets.

I find counselling helps partic CBT.

talking to people outside family helps as they don't "take on" your worries as family do, so I can be more open and not have to be protective - worry about upsetting them with how it really is.

[StephanieDiane]

I had problems coming to terms with it in the beginning, as I didn't understand all that I was being told by the the consultant whilst I was in hospital. I have Vasculitis MPA.My husband got information off of the computer and we slowly read through and talked about it to try to understand. But I have never had any councelling. My family could at the time see that I was ill as I was in hospital, but now like you they say , you look well, infact my son-in-law thinks his father is more pourly with aurthritis.

I was diagnosed wrong in the beginning, we lived in France and I was going to the doctor, I told him I was feeling tired and could't walk as far as I used to,even when I was coughing up blood, and had a rash over my body he was treating me for a chest infection.

In the end and after 8months of miss diagnosis we returned to Scotland, only just in time as the day after I arrived my husband took me to the hospital out patients as I had fainted. It took another month after all the tests (lung biopsy, kidney biopsy etc) before I was diagnosed, and rushed back into hospital in Glasgow.

I am at present in remission and still attending the hospital regularly and taking my cocktail of tablets, I am able to walk again although I do get tired. Good luck for the future .

[SandieB]

Hi there i agree with Nadine, i have had WG for 20+yrs now and have had lots of ups and downs and yes people do think you look well but they dont see the cocktail of drugs you have to take, all the biopsy,s and Xrays you have to have and they certainly dont no how you feel inwardly, i have a problem with people saying I NO HOW YOU FEEL oh no they dont. Its not going to be easy but the patient must keep a positive attitude even with counselling and you will get through, Take care and good luck for the future.....

[milliewin]

Yes I agree lots of ups and downs and even family don't completely understand understand. it is especially difficult for my children who since the acute phase of my Cerebral Vasculitis has passed it is hard for them to understand as yes compared to before I look relatively OK but due to the brain damage I feel far the from OK?

Even my neurologist used to say I looked well, however he has finally written in his last clinic letter that the damage I received to my right side of the brain is very underestimated, AT LAST IT IS ACKNOWLEDGED 4 YEARS on!!! He is helping met to get a referral to a hospital for some neuro-rehabilitation, so fingers crossed, however it is something I have had to push for and not give up? So I would say to get any help you can, even the consultants don't always get things right especially since the type of VasculitisI have is so rare?

Best wishes

Sarah

[kath12341]

Hi I had counselling through work support it was very useful although it was onoy for 6 weeks she found out lots of info and all about the vasculitis trust. I also found that as i was getting hassle from work about time off when having treatment showing them somethign at work or to a relative is useful. If nothing else it is a release valve so you dont have to put on a brave face or feel guilty if you want a good cry and ask why me.Linda