I debated whether or not to write a post today. Today was a long and exhausting day. Not much different from any other day that I leave the house. Except on this day, I didn't cry alone in my room or in the bathtub so I could easily wash away the tears in a safe place, by myself like I always do. Today, the last thing I wanted to do was think about my health issues and especially cry about them. But that is in fact exactly what ended up happening at my family Christmas party. Extended family Christmas party with cousins, aunts, uncles and all. Normally, I'd be humiliated. At first, I felt so embarassed for crying and letting my emotions get the best of me when asked about how I was handling things. But, I'm realizing that just because I cry in front of someone, doesn't mean that I'm weak. Crying isn't weakness. What I really learned today is that I've gone through hell and I'm still going through hell and I am so much stronger than I ever realized.
This is something I don't like to say about myself; that I'm strong. I find it strange for some reason to label myself as strong. Although it's true that I know better than anyone the strength I have had to summon to live through this past year, and especially these past couple of months. I have found a strength that I never knew I had. And sometimes, maybe people don't see it. I made a commitment when I started this blog to be honest and open and try to explain to the best of my ability, how it is to live with chronic pain. For me, writing is an outlet that helps me and makes me feel better. It's also a way for me to feel like I am contributing something to certain people in the world. Because of the commitment I made to this blog, I've decided to be as open as I feel I can be. That includes on this blog, on facebook, on instagram, etc. It bothers me when I know someone is struggling and hurting yet their facebook profile is filled with happy memes, and smiling photos. If you're hurting, that's okay. If you're going through something, that's okay too. Social media wasn't designed for us to express our hurt and our pain. Social media provides this filter that we view other people's lives through. A happy filter, an excited filter, a success filter, a perfect family filter, a relationship-goals filter. But there's no depression filter, no mental illness filter, no chronic pain filter, no disease filter, no hurt filter, no loneliness filter.
What I'm getting at is that I've had a few people comment that I should "probably keep personal things, personal." Let me tell you this, we live in a world where social media is the norm and we find out that our friends got engaged on facebook through a cute photo or a heart-warming status update. We see photos of people's weddings on our timeline's instead of seeing it after it was pulled out of someone's wallet. We learn of pregnancies through adorable photos that suggest a growing bump, or a pair of excited soon-to-be-parent's. So if this is normal, if this is acceptable, if this is the world that we now live in; why can't I share my news? My news isn't beautiful, adorable, heart-warming or exciting. My news is sad, painful, upsetting, and troubling. But it's honest and it's real. This is my news and I believe that if social media is going to play such a huge role in our lives, that it shouldn't just be a place for the happy filter, but for the pain filter as well.
I am well aware that some people may read this post and shake their heads or just scoff at the fact that this blog exists at all. I am well aware that pain is personal, but so is happiness, so is joy, so is love and family. But we share those things openly, and pain shouldn't be any different. Especially in the case of someone whose life is so constantly affected by it. The honesty and openess that I have maintained throughout this journey on social media has brought me so much hope and so much support. I don't know where I would be if I didn't start this blog, or if my online support groups didn't exist, or if I didn't receive the loving and supportive comments from facebook friends, kind strangers and fellow chronic pain lifers. I guess it's hard for some people to understand, but being in my position, the online community is one of the better places to find support. I just want to be clear, I'm not writing to post to defend myself to those that may think I share too much or to try to convince anyone that what I'm doing is right. I'm just doing what I always do; I'm writing honestly about what I feel.
If social media is a part of our lives, then I'm going to envoke the pain filter. And that is not a negative statement.
#painfilter #LetsGetReal
I've been trying to keep up with your blog as much as I can but I miss some here and there...first let me say, keep going...keep going with the blog, keep going with your journey to medical answers but most importantly...just.keep.going.
ReplyDeleteI understand a lot of what you have been experiencing with chronic pain and depression and all the nasty things that come with them (please note it's 3am). I too have symptoms that come and go and I understand the fear of not knowing when they will 'hit' and not knowing where you will be or what you will be doing! I too have had some tests that do not give clear answers or worse none at all. I choose not to post about these on social media but thats because my use for social media is to keep in contact with family and friends afar and keep them updated on Rylie. I choose not to talk about my daily struggles because I don't feel like it helps me. For me, it has the opposite effect and makes it harder for me to focus on positivity. Don't stop doing what making you feel better -even its just a little and not for long - do what you can each and every day to get through it because you have to just.keep.going...
I appreciate you taking the time to read this! It means a lot to me. And absolutely, for some people it doesn't help to talk openly about it. For me, I find it offers a new kind of support and understanding. And I feel called to share and bring awareness to it. It helps me and writing is theraputic for me as well. I find comfort in the comments I receive and the support from other's on facebook and other forms of social media. It helps me to stay positive.
DeleteBut you're right, we need to just keep going one day at a time.
xo
My motto is I LOVE HATERS....because they give me the motivation to keep going. I feel like i have to prove them wrong. It doesnt matter what anyone thinks...you do you! I know what you are going thru. It took me 16 years to get a diagnosis. Everyday was hell for me. I still have horrible days but i have great days more and more. I do not have MS but a congenital defect known as chiari malformation with syringomyelia. I had brain surgery to correct it and am better but i love with chronic pain due to irreversible nerve damage that the surgery couldnt fix. Everyday is a struggle but you have to keep going. If this is your outlet then who cares what anyone says of thinks! My son was recently diagnosed with MS. He too is going thru a depression and feels hopeless but he is finding ways to cope. Once you get a diagnosis things do get a little bit better. Just do you and forget about everyone else.
ReplyDeleteTotally agree with you! A lot of people who show hate instead of support are the people that teach me the biggest lessons. They help me to figure out what it is I wish I could say to them. And it motivates me to take better care of myself. I know how I feel and I know the pain that I am in, they don't. I'm so sorry for all that you are your son are going through. I'm not diagnosed officially with MS but my doctor thinks that I have it. I have a lot of symptoms that are progressing quickly and I also have another gynecological disease. It's hard to fight so many things and learn to manage. But this blog helps me cope and so does the support group! Thank for you taking the time to read and comment. I so appreciate it. Good luck to you!!
DeleteHi Coral,
ReplyDeleteI was sent the link to your blog by a friend of your aunt! She thought, rightly, that I'd be interested in your blog since I have MS myself and also write a very honest blog.
I agree with all that you say in this post. Who decides what's personal? When MS symptoms start getting more obvious then it's no longer something secret and personal. I also have been going through 8 years of infertility. I think that's pretty personal, but lots of people seem to think that it's fine to ask me about why I don't have children or to tell me what I must be doing wrong! For a long time I didn't choose to talk about it. Since starting my blog and, among other things, writing about that, it's been so freeing. I think it's so important when people like us choose to open up about life's challenges and about what is and isn't helpful in the midst of that. We each choose how we respond to these challenges and I'd never criticize anyone for choosing to keep it to themselves. It has to be the right moment. For me it was the right moment to start blogging about a year ago. It's so great that you've found that right moment for you too.
I agree with you that crying isn't weakness. Sometimes, those tears just need to come out and crying is actually an important part of being able to keep going. It's like letting off some steam so that we don't explode with it all. I feel for you particularly at the moment, as you're still in that middle place of not having a definite diagnosis and possible treatment plan. That's a tough place to be. If people ask you how you are, then they need to be prepared to cope with the truth, otherwise there's no point asking the question.
Like you, I find writing to be very therapeutic. I think it's so important to be able to keep expressing our identity, and being honest, in the midst of illness. An illness can take away our identity if we allow it to. But blogging is a way of saying that that isn't going to happen. I will follow you on twitter. I have a facebook page too. I'm not sure if you have a page? I'll check it out too though if you do. So glad that my friend sent me the link to your blog. I look forward to reading more of your posts. I'm definitely glad that your blog exists. Keep those posts coming.
Wishing you all the best and hoping that you can enjoy some Christmas celebrations, even in the midst of the tough time you're going through right now, Rachel