My Wife Is Living With Behects And Im Wondering How I Can Help More

hi all first time posting so bear with me please ... my misses of 5 years has had a hard time as long as ive known her.... she was told she had behcets at the age of 21 now 30 Its getting worse. shes on the treatment for it steriods as you all know thats no cure and as much as it helps stop it was getting majorly out of control there effectiveness is declicing just like the pain killiers they give her..anyway i just wanted to know how your love ones help you guys out and wot sort of effect has it had on your loved ones friends n family and am intrested how its affected your mental health thanks alot

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  • Hi bf....sadly it affected my marriage of 22 years...husband walked out and left me to raise an 8 and 13 year old.while undergoing chemo w my behcetc...emotionally its been extremely difficult especially as my illness has progressed these past few years. I've had it for 30...however,.I would encourage ur wife to really look at her diet...I've made major changes to mine...mostly organic...gluten..dairy and soy free. and have eliminated the majority of my symptoms and meds. If she has to take prrdnisibe...keep the dosage as low as possible as there r serious side effects from it. Just always be there for her emotionally more than anything. That's what she needs as a woman and behcets warrior. Try to keep things light and positive and tell her to keep moving. Motion is potion. I wish u all the best.

  • Firstly your wife is lucky to have you as a support. This illness can be very cruel and is very difficult to understand. The illness effects us all differently but having supportive people in our lives is a massive help so just being understanding and being there will be a big help. There is a lot of information and support available through the Behcet's Syndrome Society like the medical fact sheets they produce / help line and this forum. The best bit of advice I can give from personal experience is, is that if you are in the UK, and not already then get your wife to consider going to one of the Centre's of Excellence. They are centrally funded and you just need a GP referral. They are the experts in managing Behcet's. I am 32. I have had Behcet's they reckon since I was 12 but I was only formally diagnosed a couple of years ago. I have been going to the London C of E since last December and it's the best thing I did. I too was on steroids mainly for Behcet's and was needing bigger and bigger doses but still not very well controlled but have been started on lots of new meds since going to London and am slowly getting better - they have taught me so much more about the illness and other treatments too and ways of managing the condition I am so glad I went there. Steroids can effect your mental health but living with the daily effects of Behcet's can be very tiring too. My family struggle to see me when my Behcet's is very bad and it is very hard for me at 32 to become so dependent on them but their love and support is what gets me through the bad times. I'm afraid friends (apart from a couple of very good close ones) are another story. People seem to find Behcet's very hard to understand and there are only so many times you can try and explain things to friends - this can become quite isolating. When you are young you want to be able to go out to work and socialising etc. but the Behcet's wont allow it and that is very frustrating. You didn't mention specifically what symptoms your wife has but ulcers, fatigue, joint pain, migraine / headaches / gut problems / skin lesions / eye problems are some of the common ones but there are so many other symptoms / problems associated with Behcet's and it does effect everybody differently. I can imagine that these might impact greatly on a relationship and it must be very difficult to have to watch your wife suffer with this condition, especially as it is one of a rarer nature and is less well known about. You are right that there is no cure for Behcet's but that doesn't mean your wife (and you) have to suffer - it sounds like she needs a real medicine / medical / treatment review by somebody who specialises in Behcet's, even then, it can take a while to find the right combination of meds but then she should be able to get a reasonable quality of life. Everybody in this forum is very kind and supports one and other so you've come to the right place - I hope that this has been of some help. Feel free to keep asking questions- we are only too pleased to help.

  • Hi Bf, firstly I think it is amazing that you are reaching out to see how to help your wife more...she is lucky to have you! I am 27 and recently diagnosed after 6 years of thinking I had crohns. I have only been with my boyfriend for a year but we have been best friends for 8 years! It is a constant concern for me that he will get fed up with my stupid disease and leave! I would say the most important thing you can do is love her, reassure her, try to understand this crazy disease as best as you can! I am current trying gluten free to see if it helps with my symptoms as recommended from lots of people on here. Also not sure if you have ever read the spoon theory (?!) it is a tad long winded but is a good way of explaining how to live with long term illness and is useful for understanding how your wife will be feeling.

    Hope this helps! All the best x

  • What a wonderful husband you are. I think you would be surprised how many don't know or want to know anything about their wives' illnesses especially if the illness is chronic with no chance of a cure. This knowledge alone is enough to give anyone depression. Obviously on days when she is worse, she will be snappy, and probably tearful as well.

    Please,if you live in England persuade your GP to refer her to one of the Centres of Excellence, or if you are in East Anglia, to the vasculitis clinic at Addenbrookes Hospital. She needs specialist help as this nasty old illness attacks each patient in so many different ways, and a specialist clinic will decide what is the best way to treat her particular problems

    .

    At home, if you can get her to rest when ever possible. If she has joint pain, have you tried ibuprofen gel to use topically. This is something which doesn't have an immediate effect so you need to persevere with it.

    Take each day as it comes because she may feel a bit better one day and not so good the following. If you have a holiday or something that needs a bit of preparation coming up, I am sure you will help her as much as you can, but start working on it earlier, and take your time.

    I wish you and your wife the very best in dealing with Mr B. We are all warriors, so please ask any questions you need a non-medical answer to, as we are not doctors. (although there are many doctors who don't know as much about the disease as we do).

    A very lucky warrior with a sympathetic husband, Suzanne

  • Please read my post, these post frustrate me, I don't have all the answers, just a little bit of hope xx

  • hi i was diagnosed today with bechets its been queried for a while but now confirmed a bit daunting so any advice would be great from anyone that also has this disease. it all started really as a child with mouth ulcers after mouth ulcers and as i got older the ulcers got more and more persistant and then a big one appeared on the tongue which ended up in me having to have some of my tongue removed as it failed to heal. they were sure it was mouth cancer. then finally i was told it was not and they were unsure of what it was . Eventually sent to guys and some three years later after having mouth ulcers genitial ulcers stomach ulcers aching joints cloudy vision and the odd small pimple spot on my legs, they have now confirmed bechets so now what !!! trail of meds can i still work ? although im constantly tired is there any help out there with beneifts etc, sometimes i can hardly drag myself out of bed and when i have the ulcers i can barely eat let alone speak, any advice would be great

    Thanks guys

    shirl

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