I have recently been diagnosed, and I am finding it hard to be the person that I once was. This condition has the ability to make your life stop and start at its command. I am finding myself to be much sadder, more anxious, more easily irritated and having lower emotional energy due to the daily pain, medications, and withdrawal effects. I am fearing that this will negatively affect my relationship and upcoming marriage with my partner. I love him very much, more than he will ever know. Being with someone with a chronic illness can not be easy, especially when you see their personality and body deteriorating right in front of your eyes. I fear that he will one day find it all too much to be with someone who has a chronic illness and up and leave for an easier life. I am hoping that I am not the only one who has felt like this or feels like this. For those that have read this far, thank you. For those that reply, your words mean so much more than you can possibly imagine. Thank you.
Wishing you health and peace,
UK
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I just wanted to say I hope you feel better! Also a major side effect of prednisone is depression! If you taking that that may also bring your mood down/feel anxious/ nervous or what not.
Thank you for your response and kind words! I really appreciate it! : )
I was suspecting that the prednisone may have something to do with the emotions, but wasn't sure. With all of the weird symptoms that pop up with the condition, it's sometimes hard to connect them to their actual source. Thank you for letting me know of the connection! Making a note at the moment to bring it up with my rheumatologist the next time that I go in.
Sadly I cannot go below 20mg of pred without a major flare. been trrying for a year to get lower and each time I end up in the ER. I am just glad I no longer have to go above 100mg! The drug is amazing but also evil!
HI UK. I actually asked my partner on this one for their opinion as they have been through my best and my current worse phase. Obviously it depends on your relationship but this was my partners response (rightly or wrongly) however I have never felt more supported by anyone.
"One thing that does make it harder (can make it harder) is if you are not honest about how you are truly feeling and what symptoms you are actually suffering. The biggest thing that helped was me not hiding what was happening and being honest because they i knew how to approach things and when you needed extra support, when you were having a particularly bad day etc. In the same respect you also had good days when you wanted to do everything so i knew to take a little back seat and let you have you moment. This can only work if honesty is there.
One thing that you also need to remember is that very few people will plan a life with someone with a chronic illness like yours without knowing the pitfalls and downsides...as well as the good. If you have been together a while they will already know and love you regardless!"
Rightly or wrongly but that works for us. Like I say it depends on the relationship.
On a side note. Your medication can have a lot of side effects that make the little insecurities feel 100 times worse. My feelings of guilt were unreal. If the side effects are too much you might consider changing.
Communication plays a massive part in any relationship but I believe when you have an illness like ours it matters so much more.
If you still have your concerns why don't you try speaking to your partner. I did this and my guilt and stress were instantly reduced and it was them that put my mind at ease.
Congratulations on your upcoming wedding and best of luck! Remember you are never alone!
She also said that if she gets frustrated to bear in mind that it's not at me but rather at the situation and that BD is doing that to me and she can't do anything about it or take the pain away. She said to its important that I remember that she wouldn't change me but sometimes the frustration can be misinterpreted as annoyance with me when it's not meant to Be!
Wow! I really appreciate that you took the time to speak to your partner when it comes to this subject! Thank you!
I completely agree with you when you say that communication matters tenfold when it comes to relationships where one or both partners are afflicted with a chronic illness. I have a feeling that when I completely accept the situation myself, I will be able to be more open about how I am feeling and the reasons for those emotions, with those around me.
Your insightful second response, in regards to keeping in mind that frustration on my partner's end, may be the result of well wishing and not wishing to be somewhere else, is brilliant. The idea has definitely stuck, thanks to you and yours.
Thank you for taking the time to reply to my post and for the kind wishes and reassurance (please send a big thank you to your partner as well)! She sounds like a keeper! : )
I am glad we could help! We have to do what we can to support each other and this community makes a difference.
It's helped me to accept it more, be less embarrassed about symptoms and feel more normal knowing that there are so many other people with BD. There are patient stories on the society website too.
Seize the moments in the good days, accept the bad days and take some relax time when you can.
Remember, even your worse day only lasts 24 hours.
You are so right about not hiding aspects. It’s just one part of the communication that needs to be extra mindful of. I snapped once at my bf when I was hanging up clothes because the wrist arthritis was unreal and that motion was just brutal. He calmly told me that if I’m in pain that I need to tell him so he can help/offer to help more. God did I feel dumb. If there’s one thing he definitely did that was caring but act of strength- he said he’d let me cry. He’d let me get the sad out over the relevant situation, but once I started wallowing, he’d cut me off. It was smart on his part. I will say we still reflect to this day, together, how we communicated and handled that difficult time together. So yes- communication on every aspect is key!
I understand how challenging this must be for you. Just try your best to stay positive and distract yourself with fun things.
You'd hv no choice but to take it one step at a time and trust that God has brought you this far wont let you down.
Eat healthy fresh and organic meals,drink lots of water,wear your make up , rock your heels and looking stunning like the diva you're. Don't worry about your flare ups. Just enjoy your period of no flare ups and take it one day at a time.
Thank you for your uplifting response and prayers! To know that I am wished well by somebody I have not even met is an indescribable feeling.
I completely agree with you in regards to transitioning towards a healthier diet. I have found that it has helped alleviate some of the extreme exhaustion that I feel on a daily basis, which takes a toll on both my emotional and physical energy levels, which then affect my relationships.
Thank you for being that friend who playfully nudges and reminds me to pamper myself here and then, and not become a complete hermit (no offense intended to any hermits who may be on this forum - we still love you). : )
I’ve felt similar, but have realized that when I tell my spouse how much I appreciate him for helping/supporting it helps both me and him. I also try to just accept my “normal” and live with it as positively as possible so I’m not moping all the time (which is easy to do). I try to say “yes” to every opportunity I can when I’m feeling good to make up for the many “no’s” I have to say when I’m not feeling well. For me this works because both my husband and I are big extroverts and stopping everything in our lives when I’m not well can be frustrating for both of us. Overall, seizing the day as much as possible and not allowing myself to feel like a perpetual deflated victim is a mindset that I try to live by.
Also, I was a little more depressed once I got the diagnosis of Behcets as I felt like I was somehow “special” and “damaged”. Once I realized the diagnosis was truly just a label for the issues i had already been living with, I felt more like “me”, but more empowered with my new knowledge, possibilities for treatment, and other people to talk to with the same weird issues...
My best to you with all!! Sending positive vibes! 😊
My apologies about the lateness of this reply. I have not been feeling well recently, and as a result needed to take some time away.
Reading your post inspired me to say "yes" to some of the many opportunities which pop up during the holiday season (participating in a flash mob being one of them!) : ) And you are absolutely right about the fact that doing so helps keep the spirits up!
I also really liked your thought in regards to "Behcet's" simply being a label to symptoms that we have already been living with/ going through. The thought was: I have made it this far, we as a partnership have made it this far, and we'll just keep on going, regardless of what label is put on us as individuals or as a unit.
Thank you for the insightful reminders. Wishing you peace, joy and health this holiday season!
I no exactly how you feel Iv been with my hubby for 28 years and it's massively tested our relationship for all the reasons you state and obviously with the intimate side of things due to ulcers and scarring from previous bad flare ,hang in there talk and love will get you through xx
This is I'm sure very relevant to many people with Behcets including myself, it can also feel like you're a burden & feeling this way is very harsh on yourself as nobody wants to be a burden on anybody else in the long run especially!
And yes Prednisone can really play with your mental state, negative mood/emotions causing depression as well as lots of many other side effects.
Anyway back to the topic, trust me you're not alone and definitely not the only one feeling this way. Personally I know exactly how hard it is to stay positive and believe you can make another soul happy for the rest of your lives together. Currently in a similar situation so it is very touching to read your post and I wish you & your partner the best of luck for the future
Thank you for your response, well wishes and for making me feel less alone with the way that I am feeling.
Knowing that there are others who have gone through the same feelings or are currently in a similar situation (like you had mentioned about yourself) is a reminder to be self-forgiving.
I never realized until your post, that through feeling this way, I am being very harsh on myself when in fact, it should be the opposite.
Here's to being kind to others as well as ourselves.
You said recently diagnosed- this is the toughest time. It will get easier! I too, was not myself upon diagnosis. Endless bouts of crying, I mean -constantly crying. Felt completely worthless, actually the word I harped on was “decrepit.” I even contemplated suicide because of the never ending pain (was dealing with my worst meningitis yet) I was certain I would be miserable forever. You won’t. This is temporary. I actually had that written on a piece of paper on the wall. Keep a mantra. Stay positive, even though you don’t feel like it. I would try to distract myself by doing whatever I could for my bf, making his lunch, writing him notes of appreciation etc. Being nice to him was all I could do in return for his support. There is a really important concept that you need to realize though- stop saying you’re sorry. It’s negative. “Sorry I’m tired, sorry I’m miserable, sorry I’m sick all the time.” Start saying thank you. “Thank you for supporting me, thank you for my hug when I was upset, thank you for being here with me.” It’s positive and drives people together, reinforces the bond and support. So remember that. It will get easier. Everyday it gets easier. It seems surreal now, but you’ll look back and see how far you’ve come!
It made me really sad hearing how difficult the post-diagnosis period was for you.
I am glad that you not only found a way to stay positive, but that you have come out of it a kind person who shares the coping strategies that worked for them, with a complete stranger, knowing that you would receive little in return. Thank you!
Being inspired by your mantra "this is temporary", my mind cooked up the phrase "this too shall pass". You reminded me that the tough times do not last (and to find hope in that) as well as the fact that good moments pass as well (and to seek, cherish, and be grateful for/ during those moments).
I am striving to remove the words "I am sorry" from my vocabulary in regards to my illness, and replacing it with "Thank you!" as you so astutely put it. P.S. How did you know that I do this? I'm dumbfounded!
The feeling of helping someone who can literally empathize with me is truly the most rewarding. We are strong individuals, shadowed by a incredibly rare and difficult shadow. We need to prevail to help show the world positivity. Thank you for taking the time to read my ramblings, I am very happy they helped. stay well and remember it’s one day at a time!
I really hope you feel better soon. And don’t give up faith in who you are to the core or your partner. He knows ur heart.
Have you inquired about Methylprednisone? It has less side effects than Prednisone.
With BD or any chronic illness as you eloquently put it, we start and stop at the mercy of our illness. However, once you find a treatment that is more complimentary to your body and situation; the start and stop may be less drastic 🙏🏼
Hopefully you encouragement from all our words and you are able to celebrate you upcoming marriage. I wish you all the happiness in the world. And that you find peace and remission.
Thank you for the kind words, suggestions and wishes!
I was unaware of methylprednisone until you mentioned it in your post. I have made a note of it, so that I can bring it up during my next appointment with the rheumatologist.
You are absolutely right about finding a treatment that is complementary to one's own body and situation. Initially, I was thinking in absolutes, with the thought: "Okay. I have BD. What is THE cure?" After being bombarded with so many different results regarding courses to take for relief, through online searching, your post made me realize: "There isn't A cure. You have to find YOUR cure."
(lol Biggest voluntold (not self volunteered) treasure hunt of my young pirate life)
I am still in the early experimental phase of things, but hope that I will find a treatment to make the start and stop less drastic (as you put it), sooner than later.
Wishing you easy roads/skies/ seas in your treasure hunt.
You are in the initial phase of post-diagnosis, and it is definitely difficult as your doctors will begin by prescribing big, sloppy guns just to get the inflammation under control. One of the first lines of defense in battling Behçet’s is Prednisone. It is a great drug - very powerful and effective - if you only use it temporarily.
Many people with Behçet’s are stuck on unsustainably high doses of Prednisone for months or years. Prednisone is inexpensive, and it shuts down a myriad of inflammatory pathways without being specific. Prescribing Prednisone is an easy way for doctors to help patients feel better very quickly, which is great when there is a Behçet’s outbreak that needs to be whacked down quickly. Prednisone does other things too. That’s where we get into trouble.
As I have found out (the hard way), Prednisone can wreak havoc on the endocrine system. If too much Prednisone is taken for too long, it can trick your body into thinking that it doesn’t need to make its own hormones.
You have been recently diagnosed. How many years has it taken for your doctors to make a final diagnosis? How many Behçet’s patients does your doctor have? Have you ever tried Plaquenil, any of the biological treatments such as Remacaid or Humira, or a chemotherapeutic agent such as methotrexate? There are a lot of levers that your doctor(s) can pull once they have a good idea about your idividual Behcets condition, what system(s) it is attacking and how long you have had untreated symptoms of Behçet’s. So far, it has taken my doctors about four years to wrestle my Behçet’s into something that is more treatable.
When I was first diagnosed with Behçet’s, this kind of forum did not exist, and my search for the best doctor took me to multiple cities in the USA until I finally settled on four well-coordinated doctors. I think that your Behçet’s has a very good chance of being tamed much more quickly than mine did. There is some very good news about Behçet’s, as well: You may not have to deal with this forever.
Keep an eye on this forum and on Google. It is now believed that many people with Behçet’s Disease can be put into remission, sometimes permanently, if the right treatment is used consistently. Some people can go years without symptoms if the immune system is pulled and yanked in just the right way through biological drugs and chemo. I am hopeful that the significant organ damage I have suffered could one be stopped or reversed.
There is a lot to be hopeful for, thanks to new discoveries and treatments. Don’t ever take “no” for an answer. Question everything. Google it and contact the writers of the information that you find. We can share what works well and what doesn’t work right here on this forum.
Another huge thing to remember is that doctors tend to play at our treatment. They will throw some medications at us and tell us to come back months later. I have found it helpful to have my primary doctor appointments between specialist appointments so that I have one of my doctors looking at me every couple of weeks when I am having difficulties.
If you feel like your doctors have a good handle on your condition, continue to do your own research and make sure that you are driving your treatment and not just taking orders from your doctors. They should welcome your input because this disease is so rare. If your Doctor is resist to your suggestions, input or questions, you might need to find another doctor. It takes a certain kind of doctor to treat a rare disease because there is a lot of trial and error and guesswork - I call it the guinea pig phase. Once you’re diagnosed and doctors stop second-guessing the diagnosis, you’re well on your way.
Best of luck to you. Behçet’s is treatable and you could go into remission at some point. The hardest part, the diagnosis, is behind you. You have the diagnosis. Now that everybody knows what it is, your long-term treatment can begin. That’s huge.
We are here on this forum whenever you want to bounce something off another Behçet’s patient. Keep going and don’t let this condition deter you from the joy that is your birthright.
Hope you're surrounded by peace, happiness, good company and good cheer (even if it's a party of one)!
Do you have snow where you are? If so, let's throw in warmth in that list as well!
I am really sorry to hear how hard the search for the best doctors was for you, years back, when forums like this didn't exist. I have a feeling, that as a result of where your illness has taken you, you are mentally stronger and knowledgeable than most. A treasure trove of sorts! : )
In regards to your questions:
- It has taken 2.5 years to reach a diagnosis.
- I am unaware of how many Behcet's patients my rheumatologist treats. (My partner and I have heard his name pop up several times during other specialist appointments, as being one of the best rheumatologists in the city, which may be the reason why we were funneled through referrals to him.)
- I have never tried Plaquenil, or any biological treatments such as Remacaid or Humira, or any chemotherapeutic agents such as methotrexate. The only drugs that I have been prescribed as of yet are prednisone (not helping), colchicine (not helping), and benzydamine mouthwash (helping!).
I started a list of questions, as well as medications to inquire about during my next visit, and I am adding the host that you mentioned onto it.
Thank you for your encouraging words, for sharing from your treasure trove, as well as the reminder to question everything and never take no for an answer (basically be my own lawyer). : )
Sending good vibes for internal recovery and mental peace.
I've been with my husband for 14 years and married for 7 years.
I have had severe Bechets all my life.
He has been the most supportive person I have ever met, we have discussed how it affects him because at times he has to be my carer and although he never saw himself doing that he does it because he loves me. He jokes and calls me a cut and shut .. look good on the outside but inside is a car crash!
If you talk to your partner I think you will find they know what they are signing up for, but you also need to find peace with it. Although the side affects from the medication can make you feel depressed for this I see a naturopath and take melatonin this helps with restful sleep which can do so much for you.
I also hate to see the stress and worry on him when I get really sick it's the worst part and I can feel so guilty and am always full of apologies which he always rolls his eyes at
but we have always managed to find humour in it too you have to.
My advice is talk regularly, enjoy the good times and try and lead a normal life, make peace with Bechets and when you flare up be thankful for the love you get and fight the depression every day.
Your mental health is so important and is something you can cure unlike Bechets. Take control of it. Try meditation low level exercise like yoga and eat well go for walks and give and get lots of hugs! My go to when I am feeling like shit...
Congratulations on 14 years together! That is wonderful! : )
Your husband's "cut and shut" joke actually made me laugh. Thank you for sharing!
I am taking your advice on finding a naturopath, as well as searching for a good low level exercise that I can maintain (considering that I can't go to the gym and hit the weights like I once used to). If you don't mind, can I ask what dosage of melatonin you take and the frequency at which you take it? I have some 10mg tablets laying untouched in the medicine cabinet at the moment. : )
I am very happy to hear that you have a supportive spouse who has stuck with you through it all and that the two of you have found a way to work together and ride out the waves of life in general. It gives the younger ones like us, hope! Thank you for your reply and for the advice again! Here's to many more happy and healthy years together! Cheers!
It really does take the joy out of life.ifeel your pain.people do find it so hard to cope with like you said we not the person we once was.and how can we be. This has taken over my life to and I do struggling to live a full life. But what ever happensince between you and your partner you will find a way. I have been on my own for 3 years and I have 4 children to bring up.as you know being so unwell it is no easy job. But I try and take it one dayat a time as we all have no control on whats happening to us.just live a life that you can live thats all we can do.sending you love and strenth.
Thank you for your reply! Your level of honesty was touching.
It's very difficult dealing with BD, and the invisible nature of most of the symptoms. I can not imagine what tending to the needs of four children during a flare up must be like. It must require some level of superhuman strength. Hats off to you!
Hang in there. Take it one day at a time. Breathe.
Sending wishes of strength, peace, and love to you and the family.
I know exactly how you feel! I was diagnosed just this summer and initially I found it very hard!!!
I got very low I thought about quitting my job I asked my partner out right if he would rather us go our separate ways than be on this journey with me, in which he laughed at me and didn’t even dignify it with a response (laughter is his answer to a stupid question) my anxiety was worse than ever I never made plans of any sort because my thought was “come the day I will probably feel like shit and cancel anyway” but I have really tried not to let Behcets take over and take away the things I enjoy in life! If I am having a good day/week I will just do what I’ve always done and on not so good days/weeks I talk about it take it easy, rest and ask for help which is okay too! At the end of the day I am still me sometimes a very miserable me but still a blessed me.
Thank you for your reassuring response and kind wishes!
I can definitely relate to the feeling that you have in regards to being afraid to make plans, in the very real fear of later having to cancel. One day at a time right? : )
Wishing you and your partner peace, happiness, and fun!
Wow, you've had some amazing replies to your question, UK! Such interesting reading.
Me and hubby have been together 23 years and raised 6 kids (all flown the nest now). Here are some quick tips on surviving and staying comparatively sane.
1. Don't do everything together. He needs a release from 'caring mode' and you need to feel self-supportive. In our case, he plays table tennis and goes to football and I do creative stuff.
2. Do exciting stuff together. Have adventures! This can be a toughie as the 2-week holidays abroad in the sun most people have can be draining. We've found it better to do have short adventures closer to home, so we can quickly seize the day when I am feeling OK. We treated ourselves to a double kayak and chuck it in the car and head for a lake or river. This year we paddled in the sea for the first time, among seals and jellyfish! We also camp, as again you don't need to book ahead, and it's cheap. (Important as I am not much of an earner). We do have holidays abroad, but they are spontaneous camping road trips rather than package hols, so we can hop on the car ferry if I am feeling OK and come back early if I take a serious downturn.
3. Have an efficient way of sharing how you are. Hubby and I have a quick chat every morning about where I am on the Behçet's scale. This means we are both on the same page without me feeling like I am constantly moaning or complaining.
4. Sympathise like mad with him if he is ill and mollycoddle him as much as you can. He deserves it!
5. Make sure you both eat well. You both need better nutrition than the average person.
6. Get a huge bed with separate single quilts. Behçet's can lead to sweaty, thrashy, painful nights. No point in both of you losing sleep.
Wishing you a happy, fun, loving future. It's perfectly possible! xxx
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