Living with Lupus

[laheaford]

After last week and my daughter stopping her meds I managed to talk her in to taking them again. We had lots of tears and her saying she hates the lupus and wants to be a normal teenager. I did email her consultant at the hospital and was told that the email would be passed on to her DR but never even got a call. totally rubbish. I am just hoping that she is taking them when I am not about to see. It's all such a worry. ;(

[lupus-support1 Administrator]

I am very sorry to read this and understand how difficult it is for a teenager, when she sees all her friends doing "normal" things she is unable to do.

I am shocked by the disrespect and uncaring attitude shown to you and your daughter.

May I suggest you join the LuPUS Message Board - there is a pinned post - where you and your daughter can post. We do have some mums and daughters - so it may help you talking about your concerns. I can be contacted there too.

You will need to register: lupus-support.org

With good wishes,

Ros

[Freckle1000 Volunteer]

Hi.

What are the medications she's taking - and why does she hate them ? ( I know a lot of them are horrible )

I first had lupus when I was 15 years old. I'm 48 now.

I'm probably not the wisest person on earth - but praps I can offer some insight ?

[laheaford in reply to Freckle1000]

I wish you could. She just feels very sorry for herself. I have tried so had to talk to her and say there are people that have it worse than you and now your feeling well is it really that hard to take a few tablets a day and inject once a week. She has just all this anger built up towards the illness. I am going to take her to our GP this week and see if she can talk to someone to help her. Don't know what more I can do!

[Freckle1000 Volunteer in reply to laheaford]

Hi.

I don't know whether this will be much help ? but sometimes when you've been on immunosuppression for a bit, as bad as they are - they can have a disconnecting sedative effect. The stuff can even make you unusually happy a lot of the time. Sometimes when you come off higher doses after a prolonged flare, the 'reality' of what just happened to you can hit you in the face all at once.

After my last flare I became obsessively angry at both the health danger I'd been through - and some of the less than stellar people that I came in contact with (& friends that I lost) while I was at my sickest and most vulnerable.

It was real unrelenting rage - one nasty thought followed by another.

As it was a bit unusual for me, I ended up getting some counselling from a psychologist that specialised in Trauma/ Post traumatic stress & Grief. This ended up being exactly what I needed. (but as a side note, it took me a while to find one that I got on with and had the right amount of insight)

it might be worth an ask when you see you're GP ?

I really hope you can get some help for her and 'yourself' as you've undoubtedly been put through the grinder also !

xox

[kazp]

I've lived with lupus for 33 years now since age 9. I'm still here alive and kicking.

Have you thought about getting her to see a psychotherapist?

Someone that isn't close can often help listen and work through stuff, I know that I never wanted to tell my nearest and dearest my thoughts etc.

Myself and freckle1000 are living proof that your daughter can.

Also get her talking sharing on here, theres LupusUK website and Facebook.

You're not alone xx

[Freckle1000 Volunteer]

Hi.

I'd also reassure her that while she may be going through probably a horrible start, it does not last forever, the drugs are eventually reduced to almost nothing - and with earlier onset lupus, while it can be frightening and nasty while in a flare, once you get through it - I believe 'we' - the early onset people, possibly have better day to day quality of life than later onset lupus sufferers. (eg. We tend not to suffer from chronic arthritis and grinding fatigue)

Research and my own personal experience bears this out. Ive had 4 flares over 33 years in my life that were scary and discombobulating, but in between these events - ie. most of my life, I have been active, happy and pain free. Kapz rock climbs! I've hiked, scuba dived - (not recommended if you have Hughes syndrome though) / went to university, boyfriends - man friends, self employed. (So I can work around the flares).

Please assure her she will catch up with her peers, with the added bonus of insight, wisdom, strength and a better appreciation of every moment of life that her young contempories wont have the slightest clue about.

ps. Two of my flares were preventable. With good modern care her outlook is even better !

xox.

[Freckle1000 Volunteer]

ps. Her Doctor sounds like a prat.

[angus50]

I was so sad to read your post I can't imagine how hard it must be being a teenager with this disease. I got diagnosed with lupus when I was 26 and I felt robbed of my life at that age, so I can't imagine just how hard it must be for your daughter and in turn for you. I do hope that she is taking medication now and maybe a chat with the GP for some counselling know that it was a great help for in the early days. My thoughts are with you both and I wish your daughter much strength.

[PositivelyLupus]

Hey there, I am so sorry to hear about your daughter, I know how it feels...

I am 21 years old at the moment and was diagnosed at 16 (1st year a-levels), I'm not sure how old your daughter is but I remember feeling sick and angry at Lupus, why me, what have I done to deserve this...

The advice I can give you is just to be sure to be there for her when she needs you (but don't spoil!! haha) and make sure she knows she's not alone. Yes there are people in much worse situations than her, but maybe try and focus on being positive and know that it'll all be ok.

It may be worth while encouraging her to keep a diary, somewhere to express herself... her thoughts and feelings on her journey and maybe sharing it with you...it is also good to keep track of everything that happens for when she is older!

I don't know if you would be interested, but I have recently started my own blog of my journey with Lupus. I only recently managed to open up about my condition and try to help others. It took me a while, not many people even knew I had a condition until now, but I hope maybe you and your daughter can read and it may help.

If you or your daughter ever need any support or someone to talk to just give me a message! The website is: positivelylupus.blogspot.com

Best regards,

Ruby