Help for 16 y-o boy with lupus (and those close to him)

[william_lee]

Dear forum members

I am posting on behalf of a 16-year-old boy recently diagnosed with lupus. I am a family friend.

I would appreciate any advice from parents or friends of young men with this disease.

In particular, what can friends and family do to help, particularly as boys of this age are not very talkative or expressive about their needs and concerns?

W L

[bugsy]

Hiya William Lee :hello:

First of all :welcome: to this great place and i have to say its good to have people like you here who want to learn how to help people with lupus, i am sure we all wish there were more people like you out there willing to learn.

I think that the most important thing that family and friends can do for someone who is suffering with lupus is to read up and understand the disease, thats what i find most frustrating with my family and friends is that i feel they don't understand me and what i am going thru, i think i would find it easier to express myself to family and friends if they only understood what was going on.

Also be there for him with support and love, people with lupus and other serious illnesses often say they feel alone.

Take care :flowery: Jo :flowery:

[jude mack]

Hi & :welcome:

Jo is right the more you understand Lupus the better you can understand this young fellow. Try to remember no matter how well he may look at times, he may be feeling very ill and it just not saying anything. Just coming here for infomation, and being supportive, shows how much you care, and is about the best you can do for him. It's nice to meet you...

Take Care
Jude8)

[Christine UK]

a warm welcome and how kind of you to do this,we have some wonderful men on here with lupus and i am sure they can be a great support to your friend.

[oesa]

As a former 16 year old girl with the disease, (now a 34 year old with it...) I can tell you that the advice you've already been given is great. Just to add to it a bit, speaking from personal experience....

Having a chronic illness as a teen is very isolating - maybe even more so that having a chronic illness as an adult. Encourage him to keep in contact with his friends. I became very depressed, and I don't think anyone really noticed - my withdrawal from friends was just seen as part of my physical inability to continue with my normal teen activities - dances, swim team, baseball, etc. It wasn't until much later (university) that I fully realized that what I was feeling went beyond normal teenager ups and downs, and that I could (and should) get some help. Depression can be part of the illness itself, so if you are seeing signs of depression, encourage him to talk to his doctor about it.

Remember that he's still a 16 year old boy - kids with illnesses often seem older than they really are, but he will still need to be a teenager with all that entails. Asserting your independence as a teen with a chronic illness is trickier, because the consequences of mistakes can be much bigger. When your average teenager decides that they don't believe in conventional medicine anymore, it may mean that their acne doesn't improve, but with SLE, stopping your meds can be life-threatening. Encourage him to talk to his doctors - to ask questions about his meds, his condition, his prognosis - he needs to be involved in making decisions about his treatment.

The help that I appreciated the most were things that helped me stay relatively normal. My mobility was limited, so offering rides to movies, the mall, etc. was really helpful. I was housebound for few months, and friends dropped by with books and kept me up on the latest news from school. I also had some help with schoolwork during that time, so I didn't fall behind my classmates. (I now realize that I was a complete and almost unbearable intellectual snob at the time, so that really mattered to me...)

Other than that, ask questions, and be prepared to listen. His parents probably need a lot of support right now too. Offer them tangible help - when I was first diagnosed I think I spent hours each week in doctors waiting rooms with my mom - it must have been really hard for her to keep up with running the house, never mind how stressed she must have been.

Kudos to you for asking the question. I hope that all of his family friends are as supportive, and that his disease is brought under control quickly.

Cheers,

Lisa

[Helz Belz]

You don't say how badly he is affected, but I just wanted to add a couple things. (as a twenty year old girl whose had it 4 years)
If he is trying to study, I found discussing my study with my mum helped me SO much around exam time, I could never EVER concentrate on text, and would be falling asleep over the books. having someone to just sit with me and 'talk' about the subjects made it alot easier to sit the exams.
Also everyone around him could maybe adjust their social lives a little. I watched a lot of video's. So maybe a weekly video night, or sport watching night, with some treats and friends and family would be nice to keep him socialising. Ummm what else? :) The anti-depressants was a major factor for me, so maybe discuss this with him. or his parents. To look out for signs of major withdrawal, irritability, etc. cos that can be helped alot with medication. In terms of what family could do: Don't expect too much. Help keep his room nice (sounds silly but it can get you down) don't treat him like an invalid, but just help out. And another thing i would suggest- get him onto this site. there really is nothing better than the support offered by everyone here. it's a real life saver sometimes.
Hope he will be okay, and that he and everyone around him, including yourself, stay upbeat and strong.
PS: Never forget this is an invisible disease. although he may look absolutely 'healthy' and 'fine' he may not be. never mistake fatigue for laziness.