Newly Diagnosed?

Image: flowers. Text: Whatever lupus does to you, it will never define who you are.If you've been newly diagnosed with lupus, life is going to change in a whole lot of ways.

 You're going to be bombarded with information from doctors and support groups, and all kinds of other sources.

You're also going to find people will try to exploit you and sell you unproven (possibly dangerous) "treatments" or "cures".

Sometimes, it can be hard to find which is which.

 A good rule of thumb is:

  • Go to your doctor for medical information specific to you. 
  • Go to sources like Dr Donald Thomas' The Lupus Encyclopaedia (Johns Hopkins publishing) for general information about lupus. 
  • Go to support groups/other lupies to find out how others have dealt with problems, for emotional support, and to be reminded you are not alone in this.

You're going to have good days and bad days.  You may feel guilty that you can't do the same things on the bad days as you do on the good days.  We all go through it.  It's one of those things you just have to learn to live with.  Just make a point of enjoying the good days, so it doesn't feel like the bad days are all there are.

You will need to learn to say "no."  That's a hard thing for most of us to learn.  We have to be very selective about the things we commit to.  We only have a very limited amount of energy on any day, and we need to budget it carefully.  Spend your energy on the most important things.

Lupus can kill, and it can do lots of other horrible things.  That's one side of the story.  The other side is that with care and medication, it can be brought under some level of control, and for some patients, lupus goes into complete remission for long periods of time.  There are scientists working on better medications, targeted specifically to lupus, which over time means things are going to get better for us.

Most importantly, you don't need to go through this alone. If you can't get to an actual physical support group meeting in your area, you can find groups on social media.  The links page on this site will help you get started in finding a group that suits you.  Lupus groups are made up of people, and they're all a little different, reflecting the individuals in them. If the group you find first doesn't meet your needs, keep looking.

(Oh, and if you find people talking about "spoons" and don't know what it means, it relates to the Spoon Theory by Christine Miserandino.  You'll find it at butyoudontlooksick.com.




Some advice from other lupies:

The advice I would give to someone newly diagnosed, and I believe the most important (aside from learn as much as you can about Lupus and  listen to your doctors), surround yourself with family and friends who love you enough to learn about lupus. Those who will  encourage you to rest when you need to rest, to say no when you need to say no – surround yourself with people who will never discount what you are going through.  Those are the people who will help you remain as positive as you can during the tough times – you don’t need negativity – you need a pick-me-up in the form of “I love you”….”what can I do for you”….”it’s okay – I understand that you can’t go after all.” To those family and friends who cannot understand?  Limit your contact with them as much as you can – sad to say, but it’s necessary.  We need trust and understanding, not negativity.  (Susan, USA.)

You're going to have a long partnership with your doctors, if you don't like one, don't feel comfortable, find another doctor. (Kristen, Canada.)

Eat 'clean' and pace yourself. You are your priority, don't over do it because someone else expects you to. They will learn that it's not greed or selfishness or laziness, it's necessary. And you will learn it to. Take care of you, and enjoy taking care of you. It's a new kind of life, get yourself a hot tub and peace. (Alida, Canada.)

Protect yourself from UV radiation. Protect yourself from the sun. In about 2/3 of people with lupus, UV radiation makes symptoms worse. Get a wide-brimmed hat. Wear sunblock if you can... year round. Also, make sure you place a high value on sleep. You will need it. (Tracey, Canada.)

Learn to listen to your body most important thing to learn. (Tina, USA.)

Don't give up! Keep your head high, love life. Everyday morning you wake up and put your feet on the floor is a triumph. You'll have days you want to give up but you can't because you're a trooper!! Diagnosed at 16 I'm 33 now and been though it and still going. (Maria, USA.)

Do your research! (Holly, USA.)

Print all articles and keep them in a big binder. It's been helpful for many folks, including clueless doctors. (Phoenixa, country not supplied.)

One day at a time. Learn and share with others. Take care of you! Be patient with yourself. (Cerelda, USA.)

Always love yourself as hard as it gets don't give up. Save your spoons! (Patricia, country not supplied.)


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