Fear of getting sick

[Lucets]

So I’m really trying not to feel alone in this. But no one really knows what I’m going through except you guys. My problem is I think I have an extreme fear of getting sick again. Of course I deal with Behçets everyday but I’m afraid of having a really bad flare again. If I have smaller symptoms I get really panicky and get afraid that I’m going into a really bad flare.It’s to the point where it’s constantly on my mind lately and I’m always going through “what if” scenarios in my head. I guess theres not much to respond to. Just trying to get my thoughts out in a positive way 😅. I don’t know if this makes me a hypochondriac or not.

[marlene123]

I know how it feels but try not to think much about it, or is more likely to happen as it stresses you out.

I get flare ups when I eat certain foods and when I do I start worrying about it as well which makes it worse. I found that sometimes if I don't think about it and just RELAX nothing happens. Try to do the best you can and just relax about the rest, specially if there's nothing you can do about it.

I know no one understand why we feel like this sometimes. Many people think is just us doing a drama.

My husband understand better because he deals with this everyday. But when I go to my mums and decline some cake or something, she knows why and what it does to me but still says "why? it's just a little bit of cake, won't do any harm"

[Jaxxi]

Of course you are scared of going into a bad flare! It's a very natural fear when you have an illness like this. Fear is nature's way of alerting us to danger, and all us Behçets warriors are living on the edge of a very steep precipice.

The way to deal with fear is to listen to it, understand what it's flagging up and then do something to minimise the danger. If we don't do that then the fear keeps popping up all the time, and puts us in a state of constant anxiety.

It is great that you are being alert to your smaller symptoms, as you are obviously well aware that they can be warning signals. So listen to your body and do the day-to-day things you know will help. It might be getting more rest, eating healthily, avoiding trigger foods, walking in the fresh air, avoiding stress, steering clear of toxic people, getting a general health check from your GP. You know the things that help you feel better. Once you begin to act on your fears, the anxiety should reduce.

The 'what ifs' are indeed tough to manage. There are some practical things you can do, like getting travel insurance if you are going on holiday. You don't say whether you are working but if you are, have you spoken to your colleagues about how things might play out if you have a big flare? You could also talk to them about small adjustments to help you in the workplace, such as flexible hours, more frequent screen breaks etc.

Childcare is also a big 'what if' for many of us, and again the best way of managing the big flare scenario is to get your support network set up in advance, so you are not trying to organise things from your sickbed when you can barely talk.

Whatever your own 'what if' scenarios are, they are important and need to be dealt with. Write them down so you are not waking up in the middle of the night fretting about them. Then begin to build plans and contingencies around them.

So no, you are not a hypochondriac but a very sensible person with an unpredictable chronic illness, starting to think through how to manage it.

x J x

[gillianTS in reply to Jaxxi]

Could not agree more with jaxxi, I too go through the what if scenarios and they never help me just make my mind run away with me and before I know it I've talked myself into something that more often than not never materialises quite as bad as I had driven myself into believing 😏

Knowing how these little feelings feel should trigger you into making adjustments, maybe even taking/ applying medication to see if this helps, I know from mouth ulcers my first sign is the tiniest of tingling symptoms then I apply gel straight away and the same with genital although these are far less now. I try to view my symptoms in the same way as a headache, if I feel one coming on then I take medication straight away because I know if I leave it things get a whole lot worse and it works.

Recognising as many tiny things about each symptoms, as jaxxi says, is a really good thing, act upon this as a positive and not a negative. And as suggested write the symptoms down and what you tried to help alleviate them so next time you can do the same if this helped or avoid if it didn't.

Think positively if you can, and don't forget your mum loves you and probably like mine cannot get her head around BD and just wants to spoil you and a nice piece of cake and coffee is her way of helping to make you happy and pleases mum 🙂 x

[Expectthebest]

I have fears of suffering through another flare as well. The stress of thinking like this isn't good. I try to live for each day as it comes. I find laughter in little things. I take my meds but try not to let Behcets control my days.

[rooser1]

welcome to the world of paranoia Let me ask you this- when you got "really sick" were you on medication or under the care of a doctor yet? or still in the stages of being diagnosed? Each stage has its own fears- ill try to share with you what helped me.

after I got diagnosed, I felt worse. I felt branded, and labeled.... decrepit. I would read for hours about how horrible this disease can be (i dont recommend doing that- everyone really is different).

when i had my first ulcer, after diagnosis, and on medication- I lost it. I was like "HERE WE GO AGAIN?!?!" Panic ensued. Guess what- the ulcer happened. You know these better than most. They suck and they are annoying, but they will pass. They will pass quicker if you just keep it moving and stay up on rest (cant worry if you're sleeping ).

The best things that got me through were these:

Medication (specifically ativan). I was using it more so early on, because I would get so paranoid to the point of crying, and obviously stress will induce a flare...so its okay to ask and use these things responsibly.

Making a mantra. Grounding yourself. Come up with a phrase that "hits it" for you. Mine was "this is temporary." I just would tell myself that whenever some sort of issue would come up.

Sleep. Sleep is so critical for healing and mental health. Sleep as much as you can.

You're not alone. I feel like a hypochondriac too. If you are fortunate to have ONE person who cares for you, stop saying you're sorry to them. Start saying THANK YOU. Start finding your positives in sh*tty situations, even though you can't seem to believe them in the moment. (I have ulcers and joint pain can go to.... Wow i really need to slow down....and take a bath. this is my warning sign for next time....)

You will learn your early signs and symptoms over time. It really does get easier. When you look back- youll be amazed how far youve come!

and above all- remember we are here for you!!!

xoxo

[Legomum]

Your friends here have already given great advice. We understand the “what if” feeling. I think it stems from what can be life-changing experiences of illness. For me, and my husband, we will always remember when the eye problems hit me out of the blue on a relaxing holiday . The intense pain, the loss of vision and the complete dependence on doctors to help fix the problem. Prior to that ulcers had just been part of my life for years, but this was different. It threatened all that I had known but not knowingly valued (from independence, to career, and health and family) as with it came the likelihood that I would meet a diagnosis of Behçet’s. Fast forward another 5 years and I had a definite diagnosis of Behçet’s and was on a load of medication when I had the next big life changing flare which forced me to take time off work. I got better with the right treatment and support and back to work. Fast forward another 10 years and I was hit with a Behçet’s flare that involved A&E, hospitals and my own children seeing mummy ill and struggling. Again I recovered with the Behçet’s meds and a team of doctors and family and people to lean on.

The truth is that life in-between those big memorable Behçet’s flares was good but the “everyday life” did not stand out like those scary episodes when I felt I could lose everything due to the Behçet’s.

The psychologist at the London Behçet’s Centre of Excellence talks about the grieving process with an illness like Behçet’s, where each flare-up can push you back in to that typical cycle of feeling shock and disbelief at what is happening and isolation where some go into denial, later reality emerges and people can feel anger. Next can come feelings of helplessness so we try “if only I had done this” thinking. We attempt to regain control and start bargaining. Next is the feeling of loss and sadness until finally reaching acceptance or accepting the Behçet’s. I recognise certain phases well and think we meet patients at all stages in these online forums.

For me it massively helps to know I got through the little Behçet’s flares and the big scary ones, but also to accept they did shake my world and my family’s too, but we all survived. We got stronger and you will too. You are not the person you were when the symptoms started. Talk it all through with someone you really trust, or find someone like a counsellor or Psychologist if needed and start to recognise where Behçet’s has been a bit of a trauma in your life. As you process it, and allow yourself to grieve the loss of what you had or expected in life, things will get better. I think it is true what others say about finding the positives and my narrative of what happened has changed esp now our daughter has a Behçet’s diagnosis too. I recount the scary iritis story in a whole new light for our 8 year old eg “wow you will never guess what happened to me in the middle of a romantic trip with Daddy?....the candlelit meal was agony....and then I could not even see him!!...and we had to share a taxi to a hospital in the middle of Thailand....and an amazing doctor fixed me for about £1...but I had to wear a hideous eye patch... and that is why there are no photos of me on the beach...”

I really hope your story can change too. Opening up about how you feel is brave. Now sounds like a good time to get the help you need to beat Behçet’s so it does not beat you on a good day!

[SCMW]

Hi, well I count myself lucky at the moment that whilst I really did feel ill before diagnosis I was dealt with speedily and was fortunate. Small things have helped like breathing, mindfulness and CBT. If you want to work offline you can have a look through the CBT for dummies range of books which give some really helpful tips. It’s not easy though holding it together and coping with everyone else’s reactions too. Plus yourself! Take care.