Hi friends, I am not very good at expressing my ideas lately, but I will giveit a go. I tend to keep my pain and mobility challenges hidden. It is partly because I am a private person, partly because I have always been a hard working productive person and don't want to be perceived otherwise, partly because I don't want to be gloomy gus and partly because I don't trust anyone would really understand. Because of this approach, most people outside of my husband and daughter don't have a clue about how much I suffer. But I don't feel up to explaining it. If I had a cancer diagnosis, people get that and would ask "how you doing"? But no one ever asks me. I just want someone to say "I know you must be suffering and I can see how hard you work to keep things as normal as possible ". SO I was wondering if u would be willing to share how you go about balancing your "public face" with your private suffering?

I hope this makes sense

It's not easy Lottie. I used to try to explain the the public face what I have and how much pain I'm in, but most of the didn't get it. My husband and son get it, but even they have moments when they don't. But when I remind them, they do again. The outside world just doesn't and I now hand out brochures explaining rsd to them, because I'm tired of trying to explain it myself. As long as my husband and son and drs get it, that's all I care about. I think it's sad that people think that if you look fairly normal then you must be okay. That's so not true. I cover my not so normal parts, because I don't want people to see my messed up wrist and hand and all of my bedsores and my swollen foot, because it's embarrassing to me, but it still bothers me that they don't get it. And they can't "see" the pain I'm constantly in. I just don't talk about it anymore with them. I hope you have better luck than me in getting people to understand this illness. It's sad to say, but I think people understand cancer more than rsd because rsd is so rare. It's very frustrating. Take care and I hope you can have better luck than me with this.

It's crazy how much we think alike. It makes perfect sense to me. I keep my pain hidden unless I fully trust a person. That would be my brother and my best friend. I even keep my pain hidden from my mother, whom I have to live with because I can't work. She hassles me about not doing enough to "help" the pain. Long story there. I don't care to explain this to others either. I totally agree about you saying I just want to be recognized as someone who suffers but is workin there butt off to keep things as normal as you can. I just want someone who says they care. My mom doesn't even know the letters RSD. She doesn't even care to know and understand what I have. I even stopped talking to 2 of my closest friends, friends for 25 yrs, because they treated me so poorly.... because of my pains. It's hard to trust people and hope they don't judge me. I don't want to be known as the one who's always in pain. That's the main reason I don't want people to know. I can't win.

I'm stuck laying down in my bed, every day, so I stick to myself. Even if I had a choice NOT to I still would be. It's exhausting trying to act normal. My dogs cheer me up so much. Don't know what i'd do without them. Probably cry a lot

Heather

I'm exactly the same too Lottie. I think it's because we are fighting this disease, and trying to keep as much of ourselves (from before it) as we can. Plus of course, we are intelligent people who realise that sitting around moaning and complaining all the time would be a really bad move for many reasons, physical and emotional, not to mention how it would affect our families... We all have really bad days, but we don't want those days to become every day! I'm lucky to be fairly mobile at the moment after 18 months in a wheelchair, but I well remember being pretty immobile for that time and just getting so miserable when you realise so many people don't really seem to care that much, or think its 'unnecesarry' and you could be doing more... I hope I wouldn't have been so judgemental if things had been the other way around.

When most people don't understand a health problem, it's easier for them to just dismiss it - everyone assumes that if it were really bad we would know about it, like cancer or MS. So they don't believe it can be so bad. I gave up trying to explain the realities of it to strangers (and some friends) because they just don't believe it. You lose some people very quickly when stuff like this happens, the old 'finding out who your friends really are'...

It's not denial in my book, it's getting on with life as best as we can. This forum is my outlet for everything CRPS lol, outside here only my pain doc seems to understand it.

So thank you all

Bram.

Nice to meet you....I'm Debi from Georgia and I have small fiber neuropathy in my feet and hands (starting to move up both legs). I had a routine hysterectomy in Oct 2012, they found a small cancer in my uterus (Papillary Serous Uterine) and I started Chemo in Dec and ended in March 2013. And you're right.....they could 'see' I had an issue......no hair being the big SIGN I was pre-diabetic/diabetic going into chemo. About a month after chemo ended I could barely walk. Thought the chemo was trying to 'get out' of my body so I pushed and pushed for 2 weeks before going to my PCP in tears and horrible pain. She's treated me for over 5 years and is a sweetheart....she looked at me and immediately said 'neuropathy'.....I'm like what the heck is that ? And my journey began. I had been laid off from my job of 26 years in Sept 2012 and I was receiving a nice severance so my thought process was....I'll take a few months after chemo ends to get strong and grow some hair...lol.....and I'd decide what I wanted to do.....it was exciting to have the whole world wide open for me to decide on how I wanted to spend the rest of my working life. I had been in the office/business world all my life and was thinking of something in the medical field cause I'm a people person. So my family and friends were pretty disbelieving when this neuropathy thing started. All of them said.....exercise, exercise and exercise and you'll get better. I knew I had to find out all I could about this neuropathy. I had to be my own advocate and after only 1 visit to a foot and ankle dr I asked him to so a skin punch biopsy. They called when my results came back and I painfully drove myself to that appointment. I was pretty sure it was going to be negative and I did not want to give my family anything else to use against me......I cried when he gave me the results....not because it was so bad but because I was so so relieved to know what was wrong with me and to have proof that I was not 'faking' it. Which I never understood cause I had never 'faked' anything in my life and was superwoman....working, husband, kids, grandkids...the 'head' of the family.

My biopsy results changed all that in a second. When my husband read the report I could see the light bulb come on in his head. My A and C fibers were gone....my feet were 'devoid' of fibers. I, like you, have a husband, kids and grandkids that totally understand what's going on with me now and are very supportive.

I'm not a private person and had no problem telling prior co-workers or friends what I was going through. They don't understand.....no one understands that has not experienced severe, chronic, life changing pain. They are all nice but really have no idea what we go through daily.

You are an AMAZING woman....I have no idea how you work and hide the pain. Maybe you could print something off about your condition and hand out to a few close friends and co-workers so they can 'read' what this does to you ? Even if they will never truly understand it will allow them to 'check on you'....ask how you're feeling here and there and I know that would make me feel better in a working environment. People do care.......just in their own way.

I know this post is long but people on this site know I'm a very chatty person

Please keep us posted. I've had so much support from this site and learned more here than I could from any dr.

Debi from Georgia

I'm the same way. I work really hard at work to hide how much pain I am in. I get frustrated and upset when it shows through because I DON'T want people to treat me any differently at work. And I do a darn good job at it but sometimes there's no helping it. Like last week...I answered the back door at work for a UPS delivery and the delivery woman threw some bags on the ground at my feet (apparently she was upset that it took us so long to answer the door)...and the bags dumped snow right on my RSD ankle. I was down in an instant and had to sit on the floor for over an hour crying. It was terrible...not just the pain...but all the employees who wanted to do things for me and help me...but there was nothing they could do for me. I hated every second of that and it's the reason I DO put on a show at work and hide the pain I am in. I want normal...I don't want sympathy or for people to treat me any different.

So...I don't really "balance" it...I just accept that I put on a public face and hide the pain when I am at work or when I go out...so I don't expect those people to treat me any differently or ask me how I am doing. I use a walker...so it's pretty obvious that I have a medical condition...but I work hard to create that "normal" atmosphere around me and aside from the occasional threats from my boss about "making sure I have people help me" because if I don't he will fire me (not really...he just doesn't want me to hurt myself and worries about me...he's a nice guy)...no one mentions my medical condition at all. One of the managers even forgets that I have the walker most of the time. I mean...she sees it and knows I have it/need it...but a manager from another store asked her about it one time and she was like, "What are you talking about?" because I still run circles around most of the people I work with...I just leave tire tracks when I do it...lol!

But seriously...normalcy is very important to me and I do my best to create that around me. When I have had issues...no one has ever questioned me about it since my return to work (before...that was a different store that I won't go in to). But maybe that's because of the walker. My walker does give people a visual thing to see to indicate I have medical problems. It's embarrassing a little that I need a walker at age 30 (been using it for a few years now so started in my 20s)...but aside from the physical benefits I get from it...it definitely helps people to "see" this invisible condition that I deal with. Sometimes I get comments from strangers that I don't really need the walker or from people who think I am holding onto it for someone else...but I don't really care what they say/think. People who know me know that I need it.

Well said catra

Here’s the short version: I used to try and keep it all hidden, but at times that’s just not possible everyday anymore because there are times when I need a walker or wheelchair, or I can’t drive, or work, or cook, or clean, or do anything but lay in bed and sometimes cry. Shoot I can’t even dress the way I used to, to hide it better. God I miss SHOES!!! They so make an outfit! Lol … laughing but I’s true!

When I do tell someone I just say, it’s a rare neurological disease… ya know.. kind of like MS, or Parkinson’s (tremors). There’s a short circuit in my brain. If I say that, they tend to relate, even though there’s so much more to it than that, and I know that’s not a very accurate description. It’s usually a nod and smile kind of moment. But I typically don’t care anymore that they (strangers) don’t understand. Too hard and exhausting to explain. I have no 30 sec elevator pitch that works and that is accurate.


The longer version: (aren’t you sorry you asked me to respond? lol)

I don’t know that I keep mine hidden so much, but rather no one can always see ALL the pain and mobility challenges. I tend to vocalize mine probably more than I should. It’s happening and I don’t know how to keep my mouth shut when it’s so intense. When it’s not at a crazy level, I don’t bother mentioning the pain because it’s there and it’s not leaving and I think that it’s like a gnat that I am just TRYING to ignore.

When pain levels surge this is when I become impatient, and short, and assertive (some have another name for that… starts with a B) and sometimes downright angry and/or depressed. My loved ones can’t seem to remember that I am trying to push through, or lay down and get through the pain, or they remember but will just never really understand. Although I will say this, when it’s really bad and I am struggling to walk from here to wherever, which can be as short a walk as my bed to my bathroom with a walker, tremmoring like crazy, crying, trying so hard to remain independent, they are wonderful. They can see it.

I have been in business for myself as a video producer for one year longer than I have had this disease. My first year with CRPS was my hardest. I had back surgery and woke up with this damn thing. I was paralyzed for a week from the waist down and had to learn to walk again along with my new CRPS/RSD leg and foot. I was 10 years younger than I am now, and the disease has changed, progressed, spread, and become much more disabling. I think that made a difference (being younger) from how I am able handle my life and disease (public face) now. After I regained some, a fraction of my former self, I drowned myself in my business, and like you I have always been a hard working productive person and didn’t want to be perceived otherwise by anyone in my work environment. I learned to fake it very well. I would push and push and push and privately cry myself to sleep.

Here I am 10 years later and I am winding down my business and changing my life. I have had to come to terms (or at least try) with the fact that I am no longer able to handle the demands of my video production business AND CRPS. It’s a HIGH STRESS, crazy amount of working hours a week, fast paced profession. Hum… something I used to love about it. In 2009 I came off my last on location shoot (15 hours), the whole time on location with my “public face”, and said to my husband on the way home, that’s it, I’m done. I physically can’t do this anymore.

Since then I tried for a few years to continue long hours, fast paced, yadda, yadda from my desk. Then in 2011 I knew it was over. Or at least this chapter. I work with some pretty complicated technology, and some of the worlds biggest brands and their executives. You must be on top of your game to succeed in this industry. The disease has done a number on my mind (concentration, memory, focus, etc.) Since then (2011) I have been winding down my commitments. I have tried to look at the upswing of having time to actually focus on myself, bring down stress and consequently pain volumes, and MAYBE do a project that I actually want to work on. Not for money, but for self-satisfaction. If I have my way, there is a documentary in my future. I REALLY want to do one on CRPS… for so many reasons. We shall see. I have also thought of taking up photography. I am thinking of selling one of my video cameras for a nice still or DLSR (one that does both video and still images). I have so much desire, will and determination, and this disease does nothing but get in my way. I am trying so hard to find BALANCE. Gosh it’s tough! Seems like a four letter word at times.

I am lucky that I do have a very close girlfriend that does ask and does care how I am doing. Although we see each other much less. For the most part, I’m just not up to it. I also have some family that try to understand and have done research and have offered anything they can. But, for instance, my eldest son, 24 y/o NEVER ask me, how you doing mom, anything I can help with? I don’t know if he’s in denial, or if it’s a huge character flaw, or what. I know he loves me, but it hurts when he doesn’t at least inquire from time to time. And here’s where I am super lucky/blessed… my husband. I do not want to ever have to walk this journey without him. He’s not perfect, we’re not perfect, but for the most part he gets it more than anyone else in my life.

It is soooooooooooooo frustrating that you can’t just say I have CRPS or RSD and instantly people know exactly what you’re talking about. Even more so in the medical community.

So I guess that’s it. I guess you could say that I have less and less of a public face and that I publically and privately suffer, but NEVER am I looking for sympathy; quite the contrary. I work hard to remain independent and I work hard at acceptance. Acceptance is really hard for me.

I started this back during the holidays and not a lot of folks were actively posting at the time. So, I am asking the question again to see if others would like to share their ways of handling it.Thanks for considering.

Well said..It is so odd that we all do think alike..I have friends and even family that do not even act as though they care..My own son hardly ever calls..I just want to say we all hurt,and you know it would be a lot easier if someone cared....Hang in there,,we are here for one another..