How did you come to terms with your illness?

I was wondering if anyone could help me? I have been allergic to the sun for three years but whenever I returned home from holiday and spoke to a doctor I was never taken seriously, instead told I must be allergic to the sun lotions I was using or suffering from heat rash. I have spoken to te doctors in the past about my extreme tiredness and asked them to check my thyroid in case it was that as my mum and grandma both have an under active thyroid. The doctor refused to do any blood tests though and almost laughed at my request. In November however I developed a rash all over my body and ended up with joint so painful I couldn't stand up unaided for 4 days (5 days before starting rehearsals for a 5 week run of a musical). I went to my gp in a panic and saw a different doctor. He was absolutely fantastic and took it do seriously. He immediately sent me off for blood tests. I managed to battle through my show on adrenaline and thankfully the joint pain went away. My gp surgery made me wait until January for my results so I assumed they hadn't found anything wrong, but when i went back I was told I had positive ANA and a few other things which point to lupus. This was three days before my 22nd birthday and 12 days after I got engaged. I then had to go through a 6 week wait to go to lupus unit where I was told last month i do have lupus and since then I don't know what to do with myself. I have given up my job as a musical theatre actress despite all my hard work and being so close to achieving my west end dream. Physically it was too much for my body, and the lifestyle was causing too much stress on top of my daily life. I feel guilty my fiancé has been burdened with my lupus so young and everything is too much. I have to wait until June to get all my results back from hospital, and I still haven't been sent the letter to take to my opticians before I can start medication. I feel like my whole life is on hold. I'm trying to work out a new career but I'm so tired at the moment, I have barely any money coming in so my stress levels are so high. I don't know what to do, and most my friends have got their own troubles at the mo or are trying to do dissertations at Uni so I don't want to burden them and I'm not good at talking about feelings, but I don't want my fiancé and my mum to have to take all the burden of this. Sorry to ramble I just wondered if anyone had any advice as i know you've all been through this horrible acceptance stage. Thank you.

6 Replies

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  • Hello lillikinz,

    I am so sorry to hear of your difficult situation. You have got a lot of things to sort out whilst coping with the lupus symptoms. It is a terrible time for you.

    First and foremost remember that getting Lupus is not your fault so try not to feel guilty although I know from my personal experience that its not easy. You did not ask for it and do not want to be ill.

    It is such a good thing that it was diagnosed at last because undiagnosed active lupus can affect any organ in the body. It doesn't mean that it will, just it might. It is frustrating waiting until you can start the medication and June seems an awfully long way away.

    You say that you are not very good about expressing your feelings but this aspect is really important. You are going through a major life change and will feel a lot of loss (health, job and financial independence). It took me a year to come to terms with having Lupus and even longer to truly accept it. That was 20 years ago. It is not weak to turn to others for support but very often friends and family won't understand the condition and say things like ' but you do look well'.

    Use this waiting time to find out as much as you can about the illness LUPUS UK is excellent and they have a video for people who are newly diagnosed. I expect Paul will send you a message about this. Do join Lupus UK if you haven't already. A good book that I can recommend is 'Talking about Lupus' by Triona Holden.

    Lupus takes a lot out of your body, hence the tiredness so get plenty of rest and do not push yourself.

    My heartfelt thoughts go out to you.

    It will all get sorted out in the end.

    Big hugs

    XX

  • Take up all that Jude has said' and Lupus does have the very good DVD & leaflets, the DVD is £2 leaflets free,and we are always here for you.

    You will get there and there is light at the end of the tunnel.

    Love & Sunshine

    Jan

  • Slowly

  • Hello Lillykinz

    Everyone here is wishing you all the best. It is a frightening time, but as Jude says, do not blame yourself. You are ill and there are treatments out there that can help you cope. Unfortunately stress does make it worse so you are going through it at the moment.

    I've had Lupus for over 20 years and it has varied tremendously in that time. There didn't seem to be much information then and it was difficult to find out about it. Now you can find loads on the Internet but don't let that scare you too much. Very few people get everything - just be aware.

    Originally I was diagnosed because of a rash, and that was all I had for some years. I carried on going abroad, but did sit in the shade and use strong sunscreens - mind we thought 15 was strong then.

    It isn't really a terribly obvious illness, so that can make it difficult. Because I had a rash people would see rosy cheeks and think I looked well. It is best to be honest about how you feel - would you like a family member or close friend to hide how they felt from you?

    My very best wishes for the future

    Margaret

  • It was positive ANA that confirmed Lupus to my hosp doc when I went back for blood test results in 2005, I was 59. I dont tolerate the sun well either, I'm always looking for shade. You will learn to pace yourself and know your limits and once you adjust, and you will :) you will find life is not as dark as it seems. Make the most of your fiances support if he's willing to be there. Meanwhile take one day at a time. It might be worth your while looking at some financial help from social services.

    Your comment on the rosy cheeks reminded of my mother who used to say how healthy I looked, she would point it out to people, what rosy cheeks I had and I felt terrible, so tired. The meds have worked for me so far, and you might find once your treatment starts and kicks in you will feel better about things.

    Take heart, it will get better xxx

  • When I finally found out what I had a was relieved that there was a name for it. I just plowed straight forward in to what ever I had to do to feel better. Never gave it a second thought.

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