Sharing Too Much...?

Short version of my monster history: I've had migraines off & on all my life. They became more episodic 10 years ago with the birth of my son, then chronic 4 years ago. Two & 1/2 months ago I woke up with a 9/10 migraine that hasn't left. I've tried around 90% of everything. I have a very supportive work from home job at which I am currently not working and a loving husband.

I struggle with how honest to be with my husband, co-workers, family and friends about the truth of my pain scale. For example, I had a nerve freezing tx done Monday. Yesterday was a decent day, today was right back to square one. I hate to get their hopes up. They are hungry for good news, but so disappointed in days like today. It is twice the emotional let down for me. How do you all handle it?

Pittie

Honestly, I hide most of it from everyone.  People know I get migraines but they have no idea that it's everyday.  My family knows, but I don't like talking about it much with them because my mom just always wants to bring it up and ask repeatedly "how often my migraines are" even though there's been no change in frequency for 10 years.

SO yeah, I don't find it helpful to tell people.  In fact I have only had negative consequences from telling people the full extent.  Most of them have reactions that are hurtful.

Short term pain, people understand. Everyone has gotten short term pain at some point in their life. But when migraines become chronic or disabling for more than a few days or a few weeks, most people begin to think that you are making it up, exaggerating, or that there is something "wrong" with you - as if there is anyone in the world who doesn't have some sort of medical issue!

Only a few people in my life would I trust with the full knowledge, and it can be difficult to tell how someone will react beforehand. I've had coworkers say maybe I'm "allergic to air", I've had them assume that I have other medical issues not related to migraines just because they are thinking of me as a person who has things wrong with them, I've had workplaces assume I was making it up to get out of work, I've even had an ex-boyfriend who made comments about not wanting to pass migraines on to his future children (what an asshole).

I limit talking about it with people unless the other person gets migraines and brings it up first, or unless I have to say something to explain an obvious discrepency such as calling in sick to work (although I usually just say I'm sick, and most people don't ask for details so I don't give them).

Thank you for responding Seaine

I am getting to the point that I want to hang a traffic light for my loved ones. Something like "green: All Clear, yellow: Proceed With Caution, red: The bags under my eyes should be answer enough."

I agree with you, if I get one more, "You must be allergic to something in your house. Have you thought of that?" or "Have you tried..." or "I watched Dr. Oz and heard..." I WANT to say, "Nope, I've been sitting in excruciating pain for years but didn't think to surf the net or try to isolate the triggers! Thanks!" I know they mean well, but all the more reason to keep the communication and reality to a minimum.

The problem is people don't know what to say to chronic pain.  They want to say something helpful (even if you know it's a bit lame), or try to play denial ( which is of course totally frustrating).  Try heading them off at the pass with "I've had this for a long time, and there is nothing that really helps, but thanks for your concern.  It will eventually pass."  

My husband actually gets angry when I tell him ( mostly his own frustration), but gets even angrier if I don't tell him. Haven't cracked that one yet.

My hubs is the same way, God love his sweet heart. I'm the only "problem" he hasn't figure out how to "fix" and the one he wants to the most. Seeing the disappointment and frustration in his eyes is hard. I really would like a cave of solitude to retreat to during those times.

First I am so sorry that you are suffering from this relentless condition, Pittie, then I am want to say that I am glad you have found us, as this is one place where we all understand exactly how you feel when you talk not only about pain but all the other complex issues connected with painful and chronic condition.

Yes, people, even the loved ones, do not really want to know about the fact that you are feeling terrible again. And again. And again. Most often it is because they have run out of words of sympathy and this makes them feel guilty because they feel helpless and useless. They get embarrassed, even angry at times, which is not with you, but with themselves (but it looks as if they are cross with you which does not help).

After decades of suffering with migraine I have had all kinds of reaction in all possible situations. In the end I found that yes, basically it is pointless trying to explain  in any detail how it feels, or why we cannot attend events, family occasions, miss work etc.

In my experience a very short, matter of fact explanation with a serious, (but not tearful) sounding voice works best.
Something like a simple: "sorry I am not able to be there/ to attend/ to see you, I am unwell" is more effective then a long explanation how I was sick all night, and  my head is still exploding, and that I cannot see what I am doing since any light/sound hurts too much.

The important thing is to remember the fact that people don't know what to say, does not mean that they don't care.

Oh wow, this is a subject that I've never heard discussed and is such a big issue at times. It almost feels like people get annoyed and disgusted with me for being ill so often. If it isn't a migraine it's diarrhea from IBS. I too hide the pain and discomfort a lot just to have life feel more normal. Depression isn't much of an issue for me, I am an upbeat person but my dh gets depressed if I have too many days of migraine and it makes things even more difficult. Also people are constantly trying to get me to see the doctor yet again and I do not plan on taking dangerous prescription medications that only cause further problems.

I, too, am generally an upbeat person, but there are times in this where the relentless pain gets the best of me. During those times, it is hard NOT to reach out to my best friend/ husband which then causes him sadness. Chronic pain is the life of a double edged sword. We hold things in to live a "normal" life, but the stress and emotion can exacerbate the symptoms. We try to hold back from the meds that may help because of rebound symptoms or side effects. In our pain we gain the deepest strength by somehow managing these complex questions, I suppose.

You express our situation so well Pittie, you are brave and articulate. You say:
"We hold things in to live a "normal" life, but the stress and emotion can exacerbate the symptoms"
but no matter how brave and positive we try to be, at times we are only human so it is all right to want to share, to express the frustration, the unfairness of it all with people who are around us and yes, to expect that they will give us some comfort in return, some understanding, not so much of the pain itself (as it is difficult to explain) but to show that they believe us. This is all we want I think.

I have two real-life support groups, one for migraines and one for chronic pain. Check meetup.com to see if there's anything near you. It's really a great opportunity to share w/ others who understand, and helps you feel less isolated.

People who don't have chronic pain cannot understand, and often their reactions are hurtful or frustrating, especially if they're the ones we're close to.

-Platy

I have been looking for a real life support group From what I can tell, there isn't one in my area. I live in the Cincinnati/Northern KY area. I can't find one for migraines or chronic pain. I think that is odd. I am glad you have one.

Wow, what an eloquent discussion of chronic pain, chronic migraine, and how much to share. I don't talk about my illness anymore with my friends. They don't know what to do, what to say. I have to tell my husband and daughter, or I will go nuts, but it's hard on them. Chronic illness affects the whole family. My parents are so supportive, but I can see the hurt in my father's eyes when I talk about how much pain I'm in. He's a retired physician, and I know it must be hard on him that he can't help me. My husband drives me to doctor's appointments, picks up my Rx's, and works full time. I am too disabled to work. He couldn't be more supportive, but even he has his limits hearing about my pain and my health everyday. Thank goodness for online support groups.

Jewel
Do you have a real life support group in your area like Platy? I, too, share most of my reality with my son and husband. However, like yours, my husband has his limits. I know it is only out of love and empathy. This is all just so new to me. I have gone from a life of care giving to having people want to care FOR me. I grew up taking care of my siblings and mom, then my son. Now to have to rely on people is another painful emotional aspect of the affliction.

Pittie

Hi Pittie,

No, I don't have a support group in real life. I wouldn't be able to attend one on a regular basis. That's what I like about online support groups. You can chat when you are feeling well enough. I am fairly housebound, so being online is one of my social outlets. I know support groups can be powerful, so if you are still well enough and mobile, I would go if I were in your position. During my last hospitalization, we had support meetings once a day, and it was so helpful. But I just had to shuffle down the hall with my IV pole to attend! There is a really great community on Facebook called Chronic Migraine Awareness. It is a closed group, so all posts are private and it is moderated by some really great women. There are men that are part of the group as well, but it seems that women have the lion's share of chronic migraine. Hope that helps!

Julie

This is a great thread! It is always comforting to know there are many others who share my feelings/frustrations/situation.

I have a lot of friends all over the world, and have become very open about the migraines with them. Migraine is a part of my life, and though I don't like to be known as "the migraine friend" (I don't think I am), over time friends have come to understand just how much they affect my life, and have become more sympathetic, understanding, and encouraging. If someone hears about your condition and reacts negatively or with skepticism, just know that they are not the kind of person you should surround yourself with.

I am currently living with my parents, though when I was living alone, I found the best relief during a terrible M was to call my mom, put here on speaker, and just lie down like a zombie while we chatted about anything. Having just ONE person like this who really understands and will be patient through everything makes the world of a difference!

Concord,

That is a great point- just having ONE person to share things with makes a world of difference.  In therapy this week, I was encouraged to focus on the things I DO during a day instead of focusing on the things I used to do.  Your point feels similar.  I used to be surrounded by many people, many of whom I didn't know intimately but somehow it made me feel better.  Our illness challenges us to know ourselves and others on a deeper level, because we have to.
I also heard something on the radio that was helpful for me.  I often allow others' social network pages or "how was your weekend" conversations to deepen my depression about the lack of social life I have.  The radio host was discussing not comparing someone's highlight reel to your behind the scenes.  How true is that?  The time I DO make it out you can bet I post it all over facebook, but I don't post..."sitting in my cave crying in pain watching Snapped."  No one posts the bad, the mundane or the depressing.  That's what we have each other for!      

Pittie, this so true about social networking! I find it is easy to get sucked in, and I never feel good about it. Actually, recently I discovered a bunch of migraine related Twitter pages, and it made me immensely happy to see all the positive posts about M on social media.

As far as sharing with strangers, I have found that opening up to a complete stranger might just be the best thing. A few weeks ago I was out with a friend and an acquaintance, and told them I lost my job and was back in town with my parents because of migraines. I also revealed how conflicted I was about staying around, or trying to go back and keep my life moving where I was before. The acquaintance gave me the best advice I've ever heard: no matter what decision I make, what I do, know that it is the RIGHT decision. I couldn't believe how simple yet so powerful her words were! Yes I could spend hours on Facebook thinking about all the amazing things my friends are doing, and how much I'm missing out, but if I look at the options I have in my life right now, each of them will take me down a different path of progress, new friendships, and experiences.

I hope this resonates with others on here as well!

First of all I love your photo and your screen name, PittieMom! I am a big fan of pits and dogs of all kinds, as you can imagine.

Anyway -- I too am reluctant to even tell my family and friends anymore when I have a migraine, because they truly do not understand what a migraine is. For me, my pain level is rarely above a 7 on the pain scale, but the rest of the "syndrome" is debilitating. The other day I had to miss a day of work because I was so nauseous and dizzy -- no head pain -- on the second day of a migraine. Guess what I told my boss? That I had a bad cold. And he's a doctor. People truly do not understand.

On another note, my neurologist wants me to try Verapamil (calcium channel blocker) as a preventative. After reading the comments here on this board, I am reluctant.

All the best to you, PittieMom!!