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I'm looking for support from young people

May 16, 2015 2:43 PM

I'm in need of some understanding here. I'm only 21 and have lupus and fibromyalgia. It's flared up pretty bad right now and I feel like my boyfriend isn't very sympathetic. I've explained to him what's going on and idk, can I get some love and understanding from my community please? Thanks and I hope all who reads this is having a good day and is pain free

May 16, 2015 4:31 PM

Hi Lauren. I'm so sorry that you have to deal with two chronic conditions/diseases at such a young age. My experience started to surface when I was in my upper 40's so I just can't imagine being younger.
Besides the age difference, I think you will find that most participants in this community can relate to some if not all the issues that come up with having fibro and lupus. I think it's virtually impossible for someone without the personal experience to really understand what we go thru. My husband is super supportive but I know he really has no idea all that goes on in my body and mind on a daily basis. It's too huge. I can tell when he gets overwhelmed with my health status so I just don't tell him everything I am feeling or going through but that does isolate me. My other family members are supportive also but are clueless. I have some some people that I thought were friends. My true friends are still around but I can't always join in on the socializing due to pain or fatigue. It stinks!
One thing I found helpful in this area is that I occasionally go to certain doctors' appointments with my hubby, family or good friend and I find that when they sit in and listen to my interaction with the dr, they are able to peek into my life with a little more understanding. I hope you get some of the support you need here. We all need support and it definitely helps to know there are others ( unfortunately) also struggling with daily challenges.

May 16, 2015 4:37 PM

Oh Lauren, I'm sorry you are dealing with this I know how isolating flare ups can be for me and can only imagine how much more difficult and unfair it is for someone at your age and time of life. I can offer a couple of things but I don't know if it will be much help exactly. It's hard for people to relate that haven't experienced long term pain or medical issues, even those who have experienced injury or illness and those that have had a front row seat watching a loved one go through it often have a hard time relating but especially I think remembering. The people around us often care and are obviously there for us at the beginning and during critical periods but as time goes on and our limitations and suffering become part of our everyday life I can see how it becomes easy not to forget exactly but adapt. Especially when it's invisible to a large extent, we don't look sick, limited or in pain and let's face it most of us don't like to complain or remind those around us that we aren't doing well. In fact that's hard to put you finger on as the patient and the one living in the body, I mean when I'm having a good day it isn't anything close to a bad day when I was "normal", when I say I'm sore now isn't anything like when I felt sore before my long term issues started but that's all the people around me have to compare or relate to, you know? So for your BF it has to be even more foreign, unless he knew you before your illness. Even so it's a tough space for us to explain it has to be even tougher to understand or relate and I don't know about you but for me I know I don't like being treated like I'm an invalid or differently yet I'm frustrated when those who are closest to me don't seem to care or help me. It's a double standard, it's a double edge sword and it is really as impossible for them as it is for us just in different ways.

I don't know much about your boyfriend or if he has any personal experience to try and relate too but it's unlikely in his early 20's that he can and I feel for him but it also seems clear to me that he must be a special guy if he is all in with this realationship still after you have told him all about it. Just the fact that you fell safe and comfortable enough to open up to him about it all says something about who he is. It also says a lot about who you are, you are obviously very special yourself and he knows it, you are certainly brave and tough but you are also obviously special in many other ways or he wouldn't have stuck around. That said it isn't always enough and far too many marriages have broken up in the face of chronic illness or pain and tough as that is better you are working through some of that now. It is so much harder to do that or see the other side when your in the midst of a flare up though, I know for me anyway flare ups can cloud my views and heighten my anger and frustration. I'm often not really frustrated or angry at my husband I'm really feeling all of that more about the situation in general, my body, my illness, whatever and it comes back at those closest too me or I get set off about something that would normally be minor.

Then of course there is always the possibility that this guy isn't the right one or the relationship isn't the right one for you now. Either he isn't really mature enough to deal with it or maybe even he is behaving the way he has been taught to in life. Different families, different life experience teach us to express empathy and support in different ways and our expectations and needs are different. In that case it's a matter of wether or not you have the desire and energy to invest in helping him learn what you need. I

You always have us here and hopefully others in your life to take up the slack and support you when he isn't or can't the way you need. It's hard for people not in the suffering body to empathize and recognize when we are in our bad times, especially when they can't see it. Hang in as you know this flare will pass and you will be back to your "normal". It just kills me that someone so young at at your point in life is already dealing with chronic pain and illness. Have you seen the spoon theory? That's the best description I have right now but it's this great explanation of what it's like for those of us with chronic pain and or illness and fatigue to get through a day. It might be really helpful for helping your B F understand especially your good and bad days. A college student came up with it as a way to explain to her friend what it was like for her each day.

May 16, 2015 5:25 PM

Wishing you the best!
I'm 14 right now, but I can't relate to many people my age because they don't understand what "it's never going away..." means.
I don't know what to say about your boyfriend.
I've never dated, and honestly I don't expect to anytime soon.

May 17, 2015 3:53 AM

Better than sympathy is empathy. The ability for someone to truly imagine what it is to be like to walk in our shoes. This imagination like I have said a few times is based on knowledge of what we have told the ones that we love about ourselves. So you need to ask yourself, did I tell him enough? Did I explain the disease enough? Does he know my body is turning against me? Does he know what I have to do to keep that from happening and why it keeps it from happening? Does he know what it is like to start my morning? The details of a flair up? The dangers of a flair up? How scary this can be? How painful it is? How it zaps your resources. How you would like to do much more with him. The grief you have experienced in how this has changed your life. Knowledge is power. Communication is key.

My last thought. It may not be what you want to hear. It may bother some. I am a 45 year old man. Not that part. But this. He is young. I am guessing if you are 21 then he must be close by. I was mature for my age when I was young. I had to run a house. I had to help support my mom. I took care of all the duties of the house, cleaning and cooking from fourteen on. I started a management job for a corporation when I was sixteen. Despite being mature for my age, I was not mature enough. Would I have stood by someone's side. Maybe. I would like to think so. I actually imagine that I would. Would I have been a good support system for that person at the time or would I possibly be unfeeling at times, cutting them off, a bit selfish. Us men really don't mature into adulthood like you women do probably until about 28 or 29. At least it wasn't til then that I became much more observant and a better listener. I became a better communicator. I also at that time saw more need to treat my partner better and to communicate well. I am not saying that you can not expect these things from your boyfriend. He may be ahead of the curve on some things. We all excel at different things and I am not saying get rid of him. I just saying that part of of your lack of sympathy could quite be a lack of maturity.

May 23, 2015 11:43 AM

I'm 16 and have had this sing the 5th of August 2013. I'm here if you ever need me, I'm happy to kik, skype, snapchat, email etc. Just let me know.
I cannot relate to anyone my age either as I cannot do anything and they can do everything, they are also brash, have enjoyed their "immature years" whilst I have not only been mature most of my life (even before my condition, since I was 7ish) but due to anxiety I have no been able to experience life and now, I never will

May 24, 2015 6:19 PM

Don't say never Reece... Think positive! Rephrase to "I may never do everything but I hope to do as much as I can, when I can, one step at a time.". I'm staying positive for all of us. Even though I get overwhelmingly depressed sometimes I won't slow myself to stay negative. Otherwise I'd crawl in a deep dark hole and never return. This community is part of the light that shines in the dark. (((Hugs))) & prayers! 🙏🌼

May 26, 2015 1:41 PM

Lauren I know it can be so hard at times. It is hard for anyone that doesn't have to live with any type of chronic pain to understand what we go thru. I have Syringomyelia, Syrinx, Osteoarthritis, Fibromyalgia and several other medical conditions . So I don't have a magic formula to make my husband understand either but he has had some knee problems I have told him when his knee is hurting him to try living with that pain 24-7 365 days. He has quit gripping at me when I am unable to do things. Sorry about my spelling. Will keep you my prayers.

May 27, 2015 11:04 AM

I feel like I look at everyone differently since CRPS really hit my body. I see a lot in body language, and my classmates describe me as always looking sad. I sometimes find it easier to talk with older people, because they're overall more comfortable with talking about medical stuff. That's sometimes more relatable.
I have a few close friends, one who's had a lot of surgeries and has a family with Lupus, and I've known my other friend since middle school, she's hyper and we're both ADD so our conversations are pretty random and is okay if one of us gets sick or something happens.
Good luck finding someone to support you!

May 30, 2015 9:24 PM

Hi Lauren I'm 21 and I was diagnosed with fibromyalgia this year after a long struggle with doctors. It is hard being young and having such an illness. My ex husband kept telling me that my pain was due to being overweight and not exercising which was not the case especially because I only weigh 100lbs. It has been hard for my family to understand as well and the only person who does is my grandma which is because she has RA. My boyfriend that I have now is super understanding and encourages me to talk to others like on here or Facebook to help be a support system. We are all here to support each other. If you want to email me specifically just let me know :)

May 31, 2015 7:22 AM

If anyone needs it, young or older then you can email me at: reecebrowne1@gmail.com

kik & snapchat: reecebrowne1

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