LUPUS UK

Too cute to be ill!

Hi all. I’m Telly, suffering with Lupus for a decade but was in remission for 6 until the birth of my 3 years old daughter.

I was recently hospitalised for an abscess drainage. Although the location of the abscess on my body made it difficult to walk and sit down, I had to wait 7 hours on a chair before I could lay down on a trolley. The surgery went well and I was discharged on the same day. On my return from the wash room I found my discharge letter on the bed. I got my stuff and went to the nurse to remind her to fax the district nurse to change my dressing; she replied that I’m not eligible because I’m ‘too young!’ I told her that what blatant discrimination. Her colleague complemented me about my hair but I told them that I didn’t need the distraction.

My mobility isn’t great as my lupus is shifting towards RA symptoms. Therefore I wasn’t eligible for a porter to escort me out. I was sent off with no dressing and was asked to book an appointment with my GP. The next day to asked to talk to the matron who was unapologetic telling me human errors happen.

I was so upset by the situation because it wasn’t the first time happening. I’m in my 40’s and look alright. Should my medical conditions be overlooked because of the way I look? I want it to stop. I was told this is consider as a hate crime. Tell me what you think of this situation and share if you had similar challenges.

3 Replies
oldestnewest

How ridiculous that they didn't take you seriously because of how you look!

So often with invisible illness the symptoms aren't visal and just because I don't look pale, sore and sick does not mean I'm not ill.

I probably would complain, they should be focused on how you feel, I'm lucky that so far no medical stuff have discriminated me but a couple of people have said to me "too young to be sick". Illness does not discrimate and you should be treated right Xx

3 likes
Reply

So sorry for your experience I was in hospital in September due to passing kidney stone they sent me for a scan and found a fistula in my rectum and went for surgery next day I know how you feal I had to wear a nappy for 1 mth they the care I got in hospital was excellent but the discharge form hospital was very poor on the up side I had the drain taken out 3 weeks ago so it’s a wait and see now try not to dwell on the bad experience there are some good posts on YouTube about how to care for absences I found them very helpful just got to wait until next sept to go back on methatrexate

3 likes
Reply

I was diagnosed with MCD which has damaged my lungs and I was getting more and more breathless each day and I was waiting for ambulatory oxygen. I went to see my Rheumy a few years ago and my husband couldn't take me to the appointment so my neighbour who was nearly 80 years old gave me a lift to the hospital.

When we got there all the disabled spaces outside the outpatients department was taken away and was been used for the staff, which only a few of the spaces occupied so my neighbour dropped me off by the outpatient dept and went around the one way system of the hospital to park before she could come and join me.

At the end of my consultation with the Rheumy I asked a nurse if she could get a porter to get a wheelchair to wheel me to the carpark because there was no way I could walk there. She looked at me and said why do you need help? and the porters don't do this anymore. To which I replied thank you. I don't look ill so she was judging me by my appearance and she must have gone in to the Rheumy to moan when she must have been told my condition.

My neighbour had to then go and get the car and once again drive around the one way system to come and get me. Whilst I was waiting the nurse came back and said the porter will come and take you to the car park, I had to tell her to cancel the porter because my neighbour is getting the car.

As soon as I got home I rang PALS at the hospital to complain about the disable spaces that we were no longer able to use. I was given the telephone number for the people in charge of the parking (the hospital rent the parking spaces or land, who then wants to make as much money as possible, disabled spaces didn't make any money as it was free). I spoke to the parking person who then said the next time I come to the hospital I could ring first and give them the car reg and that would authorise me to park anywhere.

I did explain that just because I was disable it didn't mean I wanted to park for free but give us back the spaces that they took away and why not put a pay and display machine so we can pay. They have now installed the said machines.

1 like
Reply

You may also like...