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MPN Voice
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I wish I could write a happier post but for the last two years I have become increasingly fearful about going out in case I " catch " something . It's got to the stage that I'm getting reclusive which is a lonely place to be . I go to the shops once a week on a flying visit and walk my dogs where I know it's very quiet so rarely see anyone .

My husband wants me to go on days out and I always refuse and I won't go on holiday and I think he's running out of patience now ..my quality of life is not great but I realise that it is up to me to try harder ....

Has anyone experienced this and how did you overcome it? , I would really welcome your input .

Before I was diagnosed with ET. I contracted sepsis twice and was very poorly in hospital so I'm guessing that my be in the back of my mind although it was not related to ET .

I have no one else to talk to so I'm thankful for having this forum and reading your posts and I do wish you all a happy xmas

7 Replies

Dear stargazer55,

how awful that for whatever reason you have been affected in the manner that you describe. It does sound like the ‘sepsis’ may have been the trigger point, and totally understandable.

I think when something like this isn’t ‘nipped in the bud’ it escalates to the point where you need professional help; maybe in the form of counselling. Have you discussed the problem with your GP or does your fear stop you from this?

I haven’t experienced what you describe - but I have had anxiety in the past, which maybe underlying in your case. My GP prescribed anti depressants short term. It took a few weeks for them to kick in but they worked incredibly well for me.

You have made the first step today by sharing your experience, and I’m sure you will get many more supportive responses.

Mary xx


I don't know what degree of risk you have about 'catching' something, but I would be surprised if it were worse than the severity of recently transplanted BMT/SCT patients (my case 2 yrs ago). I understand your feelings - personally I wore gloves when I went shopping, a mask in crowded or coughy environments and am very strict with washing my hands and putting them to my mouth. But over time I did away with the mask and gloves. Still pay attention to washing my hands and 'delicate' populations.

Be positive and slowly change your habits.

Good luck

1 like

Hi, I tend to catch things others don’t because I have Common Variable Immune Defiency & Adrenal Gland Insufficiency. And of course I’m also on HU. I carry hand sanitizer in my car & purse. After returning to my car from a store or restaurant I use it. I never touch my eyes or mouth or nose unless I’m home where I always wash up immediately. These things have kept me from catching things I used to. But there are times I’ll wear a light weight surgical type mask from the drug store (theyre cheap at drug stores, come in a box in 2 thicknesses-I like the thinner). I forgot to wear it when I was at my doctors office & picked up a bug. But I live my normal life except I do stay away from friends/family if they’re sick. Since you probably don’t have an Immune Deficiency I suspect you’ll be fine using these techniques. But your fear has made you a prisoner in your house and you’re missing out on too many wonderful experiences. Give it a try, you owe it to yourself, family & friends. You’re tougher than you know. Katie


So sorry to hear about your suffering. My husband experienced sepsis and I know how dreadful that can be -so it is very understandable that you should be so anxious if you have been through it twice.

I can only suggest that if you have had professional advice about your personal, physical risks, then perhaps some professional advice as to how to cope psychologically -including the stress of the last 2 episodes might be a way forward. That said, your dogs must be a blessing!

Good luck!

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Dear Stargazer55 - I really feel for you - I had an episode of agoraphobia a few years ago when my anxiety disorder escalated. You say you must try harder but please do not blame yourself - anxiety is debilitating and often you think that you can do something if you just put your mind to it - but the thing is that at the moment your mind is working very hard to prevent you! My haematology unit offers psychologist appointments for MPN patients so it may be worth asking your team. I got through with a temporary increase in my medication and some counselling. Also I made sure that I did actually go out of the house each day and just crossed the road - this sometimes took me an hour as I felt like I couldn't breathe once outside but I gradually realised that nothing was going to happen. It is great that you can get to the shops and take the dogs out but it seems that this too is causing you some stress- so if you can ask for some help or are in a position to see a counsellor privately please do - I thought I would never be able to go out again without having a panic attack and it became easier and easier just to stay inside - but there was so much I wanted to do - occasionally if I am stressed with other things I still get a bit panicky but after counselling I was able to do things that I couldn't even before the agoraphobia like travelling on the tube and dealing with crowds - these things had come on gradually and I didn't notice how I gradually became agoraphobic. I appreciate that our anxieties are different but know that it is possible to get your quality of life back, in your own time get the help needed and absolutely do not berate yourself for finding things hard at the moment. All the very best, Viki


Hey Hidden... :)

Firstly, please do not ever apologise for feeling fearful, down & depressed at times, all of us MPNers suffer from such things from time to time, & that is why this forum is such an epiphany of sorts, in my view...

Well, it seems from the messages below that you have already received possibly better information & advice that I myself might offer.

Hence, I am simply writing to share that in my own case I feel for you and want to say that your fears are not unnatural nor unfounded.

Initially, I too was diagnosed w/ ET. Later after a BMB revealed a grade 2 level of scarring my diagnosis was changed to MF, and I was started on Jakafi (Ruxolitinib). Jakafi is an Immunosuppressive therapy that weakens ones' immune system over time, & as a consequence makes one more open to infection/s.

Like yourself, I too am also a tad apprehensive about contracting another unwanted infection. Hence, occasionally, I too don a mask when I am in crowded surgery waiting room clinics/hospitals, and sometimes even in shopping centres. It is simply astounding just how many people do not realise how easily they are able to infect others through a simple cough or a sneezing event. However, there are many places one can visit & travel to where they are also less exposed, & I believe that no matter what, all of us must endeavour to live happy & meaningful lives.

I have recently returned from a trip abroad to SE Asia (Cambodia & Thailand specifically), where it was my complete intention to take up scuba diving. Unfortunately, on this occasion I was too ill throughout the majority of the trip to make my bold attempt... but I will! :)

I love nature, & love even more to be in it. Its beauty fascinates and leaves me in utter awe of what the natural world holds in so many wonders & mysteries, and I for one will not die wondering...

My advice, however difficult it might seem at this juncture, is get out there and enjoy what life you can while you are still able to do so, who knows when such things might change...

Best wishes to you & yours...

Steve :)



Hello Hidden, I am so sorry to read this, it is a shame that you are feeling so scared about going out, it is definitely affecting your quality of life, so having now taken the brave step in sharing this with all of us on this forum, you may now feel like taking the next step, by going to see your GP about this and getting some help, you are missing out on so much by staying in all the time, so now you have told us you can be brave and tell your GP. Love Maz x


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