Friday, July 7, 2017

Life with Chronic Illness: 9 Reasons I Say I'm Fine When I'm Far From It

I sat down at my computer last night intending to write a Friday Favorites post and this post happened instead.  This is a post I've been wanting to write for a while and last night for reasons I'm not completely sure of I felt compelled to write.  I apologize in advance for it's length, I wanted to make sure that I included everything and once I started writing I just kept going until it felt finished.  It's a part of my effort to write more about my personal life and to share what living life with chronic illness is really like.  I also created a new tag for here called "Life with Chronic Illness" so you can just click that at the bottom of any post like this and see all the previous posts I have written on the topic.

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When you you ask how I'm feeling or doing you'll most likely get one of two answers "I'm fine" or "I'm doing ok."  You'll get this answer unless you're a close friend or family member and even then you still might get this answer.  If you want to know the truth though, 99.9% of the time I'm far from fine or ok.

You're probably wondering to yourself then why I say "I'm fine" or "I'm ok" when I'm far from it.  The answer to that is kind of a loaded one and has many different aspects to it.

1. After being sick for thirteen years it's the answer I've trained myself to say.  In all honesty, I sometimes don't even realize I'm saying it when it comes out of my mouth.  It's essentially become an involuntary response that I don't have to think about because I've said it so many times before.

2. Most people honestly don't care.  People ask me how I'm feeling or how I'm doing because they know I'm sick and feel obligated to, they think it's the "polite" thing to do.  We've all been there before, we exchange niceties with someone and ask the questions we think we're supposed to to be seen as considerate and oblige societal norms.  However most people don't really want an answer beyond "I'm doing well, thanks."  I'm not doing well though and I'm not going to completely lie so years ago I just started saying "I'm fine" or "I'm ok."  To me it's code for "I feel like shit," but to other people it's a passing answer for when they ask me how I am.  If I were to say "I'm actually doing terrible" or something along those lines then I would either feel obligated to explain why or the other person would feel obligated to ask why, but to most people "I'm fine" or "I'm ok" is an acceptable answer to the question and can even correlate in their minds to "I'm doing well" and sends them on their way because they heard what they wanted to.

3. With some people saying something more then "I'm fine" opens a whole can of worms.  This part of the answer itself breaks down into several parts:

a) So many people think they're self taught naturopaths or homeopathic doctors (and in by no way am I knocking real, educated, reputable naturopaths or homeopathic doctors because I've been to so many of them), but I'm talking about the people that are Google or random uncredited website educated, self declared naturopaths or homeopathic doctors.  They have a list full of these random things to try because they read X,Y, and Z about people with autoimmune diseases or migraines or this or that.  Well that's great, but do they know if I can take that with my medications and other supplements?  Usually not.  Do they know the short and long term side effects of what they're suggesting?  Again no.  Do they know what happens when the person taking this remedy has multiple autoimmune diseases plus so much more?  Once again, no.  And so on and so forth, but you get the picture at this point.

b) You get so many people who's aunt's sister's mother-in-law did this specific thing and it "cured" their occasional migraines or arthritis and I should just do that and I'll be fine.  Or someone's who's friend of a friend has Crohn's disease too and they just smoke marijuana and they're fine now so I need to do that and I'll be fine too.  I'm not trying to put down what other people do to feel better by any means at all, it's just that a lot of the times things people suggest to me don't even have to do with what's wrong with me or aren't feasible for my situation because of other circumstances.  Furthermore, a lot of people don't understand that what worked for that one person they heard about isn't a one size fits all solution and most likely isn't going to magically make me feel all better.  Another frustrating thing is though on the occasion that people have an idea that I'd like to try they almost never actually follow up with the information on said idea that they were going to "send" me.

c) Some people get really weird about medical stuff.  The world of medicine is a tricky place and those who Google educate themselves on the world of medicine tend to make it an even trickier one.  Some people have really strong opinions on medical things and they are not interested in hearing other sides of the argument and instead will just argue with you that they're right.  I completely believe that we all have the right to have our own opinions, but I don't appreciate someone without a medical degree or knowledge of my condition telling me that what I'm doing is wrong or not enough or not ok, etcetera.  I also take some pretty controversial medications (that I would love to not take) and because of things going on in our country people will straight up judge you for that without taking the time to understand why you have to take these medications.  (This is something I'm thinking about doing a whole post in itself on, but if you're interested in the meantime in what I'm talking about check out this article and this article.)

d) People are mean.  I know this is something that both people with and without chronic illness experience, but some people can be extra mean to people who struggle with things they don't understand.  People tell you you're being a baby, that you're lazy, that you're faking it, that you just need to suck it up.  People make "jokes" that they think are funny about it, but are actually just cruel.  These people have zero idea what you're going through, don't really care, and certainly don't want to hear about it so they just tell you the first thing that comes to their mind.  There are also the people that are quietly mean who want to know just because they're nosy, not because they care.  They want to know so they can tell their friends what you said and gossip about you and make things up and spread around rumors.  However, whether people decide to be blatantly mean or quietly mean I don't need that negativity in my life.

4. I don't want to come off as a "complainer," a "Debbie Downer," "needy," etcetera.  Let's be honest everyone wants to be around positive people, no one wants to be around the girl they think is "whining" all the time about how they feel, even if that girl is one thousand percent justified in that "whining," "complaining," or whatever the hell else she wants to do or say about her chronic illness.  Can this really suck sometimes and not be fair?  Of course, but unfortunately it's the reality of things and how the world works.

5. Some people feel the need to list things that they think I got in life as a consolation prize for being sick.  I can't tell you how many times I've had this conversation with people: 

Person- "How are you?" 
Me- "I'm not doing so well, this, this, and this is going on with my health." 
Person- "Oh wow that sucks! Well at least you look good!" or "At least you're pretty!" or "At least you're smart!" or at least a million other things. 

Pretty much any of the other things you're going to list that you think are a consolation prize for me being sick are really not and it's actually quite insulting to say them.  It's really nice that you think I look good, but I would rather look terrible and feel good and I can say that to pretty much anything people come up with.  Not to sound like a super bitch, but there's thinking positively and then there's saying stupid things that you just think sound positive and this falls into the latter category.

6. Some people feel the need to tell you about what health problems they may have and some people get this weird competitive thing going like "who's sicker," which is something I really don't want to get involved in because it doesn't do anything for either person involved.  Additionally, it's not that I don't care or am not compassionate, but it gets very difficult for me to sit there and listen to someone complain to me because they have a cold, or that one time six months ago they got a migraine, or how bad their knees hurt from arthritis and they had to switch from running to speed walking because of it and that's just been so hard on them.  It's not that I don't doubt that any of these things are difficult for people, I mean having a cold sucks, having a migraine (even for just one day) can be mind numbingly awful, and having to give up one thing you love to do because of pain in one place in your body isn't fair, but I'm often dealing with things on so much greater of a scale that I sometimes have a hard time being very sympathetic to things that seem minor to me.  What I'm trying to say is that I would be thrilled if I just got a migraine every once in awhile and while I'm not trying to belittle how having that happen affects your life by any means, when you're complaining it to me and trying to sympathize with me (or want sympathy from me) it just doesn't make sense because there's really no comparison.

7. People just don't understand.  Unless you live with chronic illness everyday it's something that is hard to understand and something that is unimaginable to most.  I can sit here and try to explain how I feel until I'm blue in the face, but it's not really something that just explaining helps - it's something you need to see, talk about, and be around constantly to even start to try to understand it.  And to be honest as frustrating as it can be for me (and it's definitely frustrating) I don't fault people for this at all because I am happy for them that they don't deal with chronic illness everyday and that they feel good and that they don't have to go through the hell that people who have chronic illnesses do.  I don't mind attempting to explain it to people who care or are genuinely curious, but it's not something that I can do by answering "How are you?" and it's far from the simple or quick response that most people are looking for in response to that question.

8. If I answer truthfully most people just land up feeling sorry for me, which I don't want.  Not to sound mean, but someone feeling sorry for me doesn't do anything to help me and honestly just makes me uncomfortable.  It's a funny thing when you get sick you actually spend a good amount of your time comforting people when they're trying to deal with their feelings about what you're going through.  I know that sounds strange, but it's so true.  Every time I make a new friend who genuinely cares and we take the time to talk about my health I almost have to go into counselor mode and help them process it all.  I don't mind taking the time to do this at all, but it's not something that I'm going to do with everyone as it's hard for me to explain and can be emotional, confusing, etc. for the other person involved.

9. It gets boring to talk about for both me and the other person (or people) involved in the conversation.  I don't want to spend all my time explaining medical stuff and how I feel and people don't want to hear me talk about that stuff all the time.  This is partially why saying "I'm fine" or "I'm ok" has become such a knee-jerk reaction for me because it gives me that little bit of normalcy I so crave and it gives me an out to not have to get into this stuff that I have to get into with so many other people.  Most days, even if I am having the worst pain day ever, I want to just say "I'm fine" and get that part of the conversation over with so we can talk about clothes, or nail polish, or a television show, or blogging, or anything to distract me from how awful I feel.

So after reading all of this you're probably thinking to yourself "well how the hell am I supposed to respond to her when she says, 'I'm fine'?!"  There's actually a very simple answer to this: if you genuinely want to know how I am, what's going on with my health, have earnest questions, and have a little time to really talk then just say, "No really.  I want to know how you are."  However, if you don't want to know, don't care, don't have the time for the full answer, etc. then just keep going with our conversation, don't dwell on it, or think about it more then you would with another person.  And guess what?  If you fall into that second category I don't fault you for that at all, just talk to me about whatever else and distract me from how I feel and I will completely appreciate that.

***

I do want to thank the people in my life though that do genuinely want to know how I am, who let me whine and complain to them all I want, that let me talk all things medical just to get it off my chest, who serve as my sounding boards through everything I go through, and who never hold anything caused by my chronic illnesses against me.  You all mean more to me than you'll ever know and my appreciation for you is more than I can put into words.

I also want to thank all the incredible people that read the posts I write about chronic illness, leave me sweet notes, and reach out to me.  You taking the time to do all of this just means the world to me.  These posts typically land up being much longer than I intend them to be (this one is just another example of that!), but they can be so therapeutic to write and I am so grateful that anyone takes the time out of their day to read them.  Last, but not least, if you have any questions, as always, please feel free to ask them below.

                    

23 comments:

  1. My friend, i have read your blog for a long long time and have never commented until today. You have said everything that I have wanted to say for so long but I just could not form the words, I just sent your blog to my husband and said here is how I feel exactly.
    I live with Intersistial cystsis for the past 7 years and some days I have no idea how I have made it 7 years with pain every day, but like you said you don't want to sound like a Debbie downer or a complainer so you just "live" with it.
    Thank you for sharing your heart today, I am so thankful for this post, it is so nice to know someone else is dealing with hard chronic pain and they feel the same way that I do.
    Email me anytime: terrigrothe@gmail.com.
    I am now following you on all social media channels because honestly we need each other.
    xo

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  2. Thank you so much for sharing your story. While I don't have a chronic illness, I suffer from major depressive disorder and a lot of these are similar. I would recommend the book Option B by Sheryl Sandberg. She has some really great advice. Again, thank you for sharing your story, I know a lot of people will connect with this.

    Cassie's Big Adventure

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  3. Thank you for sharing! I think it's unfortunate than in a world like ours we need those words rather than speak the truth and from the heart

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  4. This is an incredibly honest post. You really opened yourself up and it was a great read. Thanks for taking the time to write and share it.

    -Carine | www.rinnyandbean.com

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  5. Thank you so much for sharing your story. It's disheartening to know that some people might actually misconstrue your actual illness for complaining. I loved how honest you were in this post

    Ying | www.navigatingadulthood.com

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  6. It's so brave for people to open up and share their stories, and I love the community that rallies together when it happens. Thank you for sharing yours! Life is crazy and it's key to have a good support system.

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  7. Yes people are so mean. Chronic illness or illness which can't be seen are often not treated as seriously as those which could be seen. It's such a shame not alot of people understand this situation better.

    Xoxo
    Shi hui | IreviewUread
    Ireviewuread.com

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  8. Girl thank you for being so honest! I can't even imagine what you're going through. I'm currently suffering from depression and I can relate to a lot of it. It down right sucks and no one wants to hear about it. I hope you find the support you need and healing. XX Christine

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  9. Thank you for being willing to share your story! There are so many people who are silently struggling with depression, chronic illness, and so much more-it seems as though you are a voice for those that don't complain and that is so important!

    xoxo, SS

    www.SouthernAndStyle.com

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  10. I absolutely loved reading such an open an honest post. I couldn't imagine what it would be lie to deal with a chronic illness, but I understand each and every one of your points. People can be so mean and rude and uncaring. But there are also those who do care, they just might not know how to help - so thank you for saying how they can do so just by asking and just genuinely listening to what you're going through. I hope that you have/find those people in your support system!

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  11. Sending so much love your way! I relate to this 100%. I feel really uncomfortable talking about my health with people outside of my immediate circle. I find that most people don't know what to say, and it puts everyone involved in an uncomfortable situation. Thanks for being so supportive of me with everything with my health. Always here for you :)

    XO, SS || Seersucker Sass

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  12. It's great to hear more of your heart and your life. I am sorry for your pain but thankful that you open up about it.

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  13. Seriously awesome reading such an honest post. I can't imagine what a chronic illness must feel like, but I can understand your points! I'll definitely remember this post!

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  14. wow, this is such an insightful post. I can't relate to most of it as I do not have a chronic illness but I think it is so awesome that you were able to open up about this!

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  15. I tend to say I'm fine when I'm not. But I feel that we all are trying to appease those we love so they don't have to feel sorry for us!

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  16. Wow, so insightful! this was amazing that you opened so much about your personal life!

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  17. Thanks for sharing a post like this! So brave of you. & I agree. I would not share this information with a lot of people, meaning... how you really feel. A lot of people don' care. Stick to your 1-3 (if you are lucky you have more) people who you can talk to & open up to!!!

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  18. You are so incredibly brave to share your story. I don't suffer from chronic illnesses but my husband and I do suffer from infertility, so I can relate to a lot of your points. I know a lot of people will find your story helpful to them.
    xo, Lily
    Beauty With Lily

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  19. Thanks for sharing your story. All those Google doctors out there seem like too much to handle.


    www.andthenwetried.com

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  20. Thank you for sharing this! You are so open and honest, it is great to see. So many people suffer from chronic illness and can relate to this

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  21. Thank you for sharing your story! This was such an insightful and honest post.

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  22. Blogs like yours are the reason I wanted to start blogging. Thank you for sharing your story and being so open. There are many people out their that are shaking their heads relating to this and are able to feel connected in so many ways.

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  23. Thank you so much for sharing this! You are so brave!

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Thank you for taking the time to stop by The Blush Blonde! I love all of your comments and make sure to read each one! xoxo

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