An open letter to family and friends...

Having SPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not know even a little about SPS. In the spirit of informing those who wish to understand, these are the things I would like you to understand about me before you judge me:

SPS causes painful, unrelenting muscle rigidity and spasms.  I have had doctors gasp and tell me that my muscles are “stiff as a board.”  If I am fatigued, stressed, or get startled, the rigidity turns to painful spasms that can last for hours.  The tightness in my neck and shoulders causes headaches that often turn into migraines that can last for days.  The treatments include drugs like Valium, Ativan, muscle relaxers, and pain killers that leave me sleepy.  Other treatments are expensive and exhausting and include IVIG infusions and plasmapheresis.  Eventually, I will most likely need a wheelchair and may see joint deformity.  Luckily, this condition is not passed down in families.  I do not know why I was given this challenge.  I do know that I am fortunate to have found an excellent group of doctors to follow my care.

Please understand that being in pain doesn't mean that I am not still a human being. I have to spend most of my days in incredible pain and exhaustion.  If you visit I probably don't seem like much fun to be with.  I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about your life too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been in pain for years. I can't be miserable all the time, and in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I am happy. That's it......it doesn't mean that I am not in a lot of pain, or I am not extremely tired, or that I am getting better or any of those things. Please don't say "Oh, you sound better!" I am not sounding better. I am sounding happy. If you want to comment on that, you're welcome to do so.

Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I managed to stand up for 30 minutes yesterday doesn't mean I can do the same today. With many diseases you are either paralyzed or you can move; with this one it gets more confusing.

Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.....it applies to everything.

That's what SPS does to you.

Please understand that SPS is variable. It’s quite possible (for me it’s common) that one day I'll be able to walk to the park and back, while the next I'll have trouble getting to the kitchen. Please don't attack me when I'm hurting by saying "but you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If that happens, please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me much worse. Another statement that hurts is "You just need to push yourself more, work harder..."SPS includes malfunctioning nerves and muscles, and our bodies don't repair themselves the way yours do. Pushing myself can do far more damage than good and could result in recovery time of days, weeks or months.

Please understand that SPS may cause secondary depression (wouldn't you get depressed if you were hurting for months and years on end?) but it is NOT created by depression.

Please understand that if I say I have to sit down/lie down/take pills now, I have to do it RIGHT NOW--it can't be put off or forgotten just because I am out for the day (or whatever). SPS does not forgive.

Please understand that I don't want you to suggest a cure to me. It’s not because I don't appreciate the thought, and it’s not because I don't want to get well. It’s because I have had almost every one of my friends suggest one at some point. At first, I tried them all, but then I realized I was making myself sicker, not better. If there were something that cured, or even helped, all people with SPS would know about it. This is not a drug company conspiracy; there is worldwide networking (both on and off the Internet) among people with SPS, and if something worked we would KNOW. If, after reading this, you still want to suggest a cure, then do it, but please don't expect me to rush right out and try it. I'll take what you say and discuss it with my doctor.  

In many ways I depend on you -- people who are not in pain. I need you to visit me when I am in too much pain to go out. Sometimes I may need you to help me with the shopping or the cooking. I may need you to take me to the doctor or the physical therapist.  I need you to not be afraid of what to say or do.  Just letting me know you are there for me can mean so much.  Some days what I really need is a hug.  You're my link to the outside world.

And as much as possible, I just need to be understood.