Do you think psychological support is... - LUpus Patients Un...

LUpus Patients Understanding and Support

3,413 members1,254 posts

Do you think psychological support is necessary as part of your overall care?

lupus-support1 profile imagelupus-support1Administrator96 Voters

Please select one:

5 Replies
Danielle2419 profile image
Danielle2419

Upon diagnosis of lupus at age 17 last year june (now 18) it felt my life was over shortly after things got from bad to worse with hair loss slight more pain etc etc prompting the onset of my depression to kick in i was at the lowest of the low and wasnt getting much help from the nhs thankfully i have wonderful family members but mostly my fiance who picked up the pieces. He did a better job with psychological help than the nhs in my eyes

lupus-support1 profile image
lupus-support1Administrator

Dear Metoyou,

Welcome! Thank you for your response.

I understand how badly you may be feeling regarding the lack of psychological support. It is painful and distressing having to live with lupus. Lupus is unpredictable and we do not know how we may feel from one day to the next. Medication takes its toll on our bodies and we can feel very alone and isolated.

You are very fortunate to have the support of your fiancé and family.

If you would like to talk some more, to me and/or other people with lupus, please create a free account here: lupus-support.org/LuPUSMB

Membership means you can talk to others and only Members will see your posts.

I can also be contacted there too.

With good wishes,

Ros

cassper profile image
cassper

Hi I was diagnosed nearly four years ago my active life hit a dead end I've been involved in boxing most of my life ,boxer and coach , so I know the hardest fight il ever have is this battle against lupus . After pericarditis and unable to walk for months it's been a long road back to being able to live and function as a person again. As I've got stronger physically my emotional well being has taken longer to regain , it was only last week that I had a referral from my gp to psychology only to get told no specialists in lupus . I have been attending a meditation class that really helps settle the emotional side of lupus ,. I find healthunlocked to be a great help as it can get lonely in this long fight against lupus ..best wishes to all--

Whathappned profile image
Whathappned

Hi

I'm new to all this both the lupus and writing my opinion on these. Mind I haven't stopped since I found the site. It's so good to be able to share and know these people actually have some idea what you are feeling.

I am a Nurse, I even have a little experience from my Orthopaedic days on a specialist rheumatology ward in Middlesex where patients travelled from all over to get care there but it was only a year. In one way this gave me some knowledge but not what I classed as helpful as we never saw well patients except those coming for their regular assessment and physio. When the Sister of the ward was diagnosed with Lupus it was quite a fright. Anyway years later it had never entered my mind my symptoms might be Lupus, although RA was an option. It was a big shock, my friend had taken the bloods to rule out things not to prove I had it. Since then I've wanted to talk but who to. My husband is great but he worries, my mum is 84 and coping post op after cancer and my sister is caring for her. Work have been really good to me but are mainly concerned that brain fog isn't putting my patients at risk (don't worry I call in sick if that takes over x).

In hind sight I should of asked to see the Nurse Specialist and initiated an appointment. I thought I'd get to talk when I was started on hydroxy but she hadn't been aware of my appointment or something. So had to just stick to the matter of drugs. Luckily starting on Methotrexate she spent ages going through my various blood results, explaining what they where thinking and why. It was such a relief to have some sort of explanation that I could give others.

Since you don't necessary get a definite diagnosis counselling is needed. It would of been nice to be able to see someone with knowledge.

I have been quite surprised at the lack of help. When they considered I had CFS I was sent for a rehab type assessment to help decide if I felt I needed help psychologically, physically etc.

It would be nice to see a rehab type facility for connective tissue diseases. One where counselling, physio, exercise advice took place.

COPD, MI and CFS/ME, all have rehab set ups. We should be following these examples with counselling and exercise advice.

I have been through cognitive therapy, one to one for depression, and I can honestly say I didn't go with an open mind, but it worked and I continue to use the techniques. Yet I still need help at times with my depression and i definately need help to deal with lupus/myositis and it hasn't been easy to find. X

lupus-support1 profile image
lupus-support1Administrator

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

You have had a great deal to deal with, your own health and also your mother's well being, especially after her cancer operation. This must be a very anxious time for you, your sister, your mum and husband.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros