Being Thankful in the Midst of Chronic Pain.

November is a month (typically) filled with posts of gratitude and daily updates on what people are most thankful for, but when you have chronic pain/illness Thanksgiving can be very difficult.

I am not going to sit here and say that being thankful is easy… it is NOT. I’m lucky enough to have things in my life that keep me grounded and that I am extremely grateful for. But more often than not I feel quite the opposite. I grumble at the prospect of another medical test, I moan about how desperately I want to eat the foods I used to be able to eat, and I cry for the life that I “should” have had before my body rejected me. I don’t like feeling this way, but I recognize that it is my human nature to want something better than what life has given me.

I used to suppress that part of my personality. I would always put on my mask of gratefulness and fake my way through life. There are a lot of times I still have to do that (I work in customer service, I have no choice), but I refuse to be an artificial version of myself with those I care about. They deserve better and so do I.

Some people can’t take it. There are people that look at me and all they see if that bubbly girl that used to have so much life! Now I’m always so “cynical”, when did this happy person get so cynical?! A- I’m not, I just roll with what life gives me. If life gives me one piece of crap after another, I can’t be held responsible for my attitude. B- I have always been this way, now I’m just not faking my way through my day.

Does that mean I’m never grateful? No, of course not. As I said above, I have so many things to be grateful for and I am, very much so. I just find that when in constant pain, it can be difficult to express properly. Just typing a daily “today I’m thankful for…” post feels empty. I’m in no way saying people shouldn’t do those posts! If that is helpful for them, go for it. For me, it’s just another thing I have to fake my way through, I can’t do that anymore.

Every day my gratitude is expressed in the things I do, not in the words I say. I tell my kids how much I love them. I thank my husband for all he does for me on a daily basis. I work until I can hardly stand it anymore, because I love my job and I appreciate the opportunities it provides me. I do whatever I can for my extended family, because they’ve done so much for me.

I’m blessed to have people in my life that care about me, I know this. I wish everyone could experience that love. I also have pain, I do not wish that pain on anyone… ever. So when I say I’m grateful for anything, it is huge. Monumentally huge! My body is literally fighting me, every single minute, of every day. I will not make empty promises, nor will I pretend to be grateful for what I do not have.

For those that do not have someone in your life that helps you, there is still hope. There will always be that one thing to get you through. Simply find it. Grasp on to it and do not let go. Don’t let anyone push you to be anyone or anything you’re not. If you’re in pain, never let anyone invalidate that feeling. You’re allowed to express how you feel! You are important. You. Are. Important!

Finally, I am thankful for you… really.

What does “Ableism” mean to me?

Ableism (officially means)- a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. But what qualifies anyone to asses these “practices and beliefs”? How has it that ableism has gone unchecked for SO long? This is more than just discrimination against disabled individuals, this is about able-bodied people going out of their way to find fault in our disabilities.

It may not seem like it, but one of the worst forms of ableism is unwanted/unsolicited help. “Help” is a very vague term; sometimes it can mean physically helping someone with a difficult task, this is not the kind of help I am talking about (although there are cases it can be the case). I’m talking specifically about the times that able-bodied people suggest they are helping someone with a disability by giving them “advice” (whether we want it or not).

Let me make this VERY clear… not ONE case of invisible illness is exactly the same. NOT ONE! So, we don’t care if you know someone else with our condition that magically got better (insert enormous eye-roll here), or if you read an article one time that said if we did……. all our pain would disappear. You’re not helping! It’s ableism, whether you are meaning to or not. You’re assuming to understand how we feel, but you don’t, you can’t.

So, how does this factor in to the official definition? Perfectly, that’s how. Unwanted/unsolicited advice is both a belief and practice (on the part of the advisor), because they’re assuming the disabled person does not have the ability to properly care for themselves. When in fact, most people with disabilities are significantly more versed in their illness than most doctors (not necessarily specialists, but it can feel that way sometimes). When anyone without disabilities suggests that they “understand” what we’re going through and offer advice for potential cures, it is like a knife in the back! Unless you are my doctor… I don’t want to hear it!

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Another significant issue is people asking if we’re feeling better. No, we’re not and that’s a horrible question! Better than what? Better than when? We’re used to the common “How are you feeling?” it sucks and we have to lie every time, but at least we have an answer for it. Some of us completely lie and say “I’m ok” or “Good”, others say “Fine” and leave it at that. Personally I’ve found that saying “I’m here” is a good way to stop the conversation, without making anyone too uncomfortable. But when someone asks “Are you feeling any better?” I cringe! It’s ableism to assume that I will get better at all. “But don’t you WANT to get better?” I do, of course! But I have an incurable disease… this is not up for dispute. Think before you speak.

If we want to complain, we damn well are allowed to complain! If any able-bodied individuals out there think differently, see ya. Does this mean no one else can complain about anything else, of course not! But do NOT compare your headache to my chronic migraines. Never compare your back pain to my dislocated ribs and curved spine. Don’t say “I know how you feel” until you’ve been diagnosed with something comparable. Period.

I’ve been a little harsh today, more so than usual, but for good reason. The disabled community deserves to be heard and have our rights upheld! Let’s put an end to ableism!!!

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A Day in My Shoes

How many times have you said “If they could spend one day in my shoes (one minute even) they might understand how I feel”? I’m guilty of saying this as well, but the more I really thought about what those words meant, I’ve cut it out of my vocabulary. Here’s why.

As someone with multiple invisible illnesses, I live every day in constant chronic pain. I manage that pain as best as I can, but it’s always there. I would never wish this on anyone… not even for a minute. It’s easy to think differently when your doctor is staring blankly at you while you are trying desperately to explain your symptoms (and all they do it add on another prescription). It’s easy to think that way when you see a post from a (well meaning) friend or family member trying to convince you that their product will cure everything. It’s especially easy to think that way when someone judges you for using your disability accommodations (like parking placard, benefits, mobility help, etc.), where you’re left feeling broken and alone. Why shouldn’t they feel your pain?! Why shouldn’t they know just how horrible they’re making us feel with their words? Because we have to be better.

Think about it. How can we advocate for our illness if we’re willing to allow anyone else to feel that same pain? For me to say “I want you to know what this feels like” is like me saying “I honestly think that you should be put in an iron maiden that’s set on fire, that might give you some indication of how much pain I deal with on a daily basis”. This might seem like an over-exaggeration to some, but for anyone that’s been through a flare… it’s completely accurate. We have to be better than that.

Let me put it another way.

As a parent, I strive to teach my children the difference between right and wrong. I honestly believe that most parents want the same for their kids. Not all people succeed in this goal, but it is an inherent desire we all have. Unfortunately there are some people out there that choose violence as the answer to every problem, and therefore instill that mentality onto their children. I hope and pray my kids never see that in me. This is one reason why I would never want them to hear me say that I hope someone else could feel my pain. They know what I go through every day, they’re not blind to my pain. So to curse someone else with the same infliction, would be as violent an act as any they could see on the news. Is it starting to sink in?

Education is key! Let’s annoy people with awareness posts to the point that they have no other option than to ask what’s wrong. Let’s make hand-outs for people that explain your condition, so when someone judges you for using a prescribed medical device or doctor issued handicapped placard, they learn something new. Let’s make our voices heard! Just because our illness is invisible, doesn’t mean we are! I never want you to feel this pain, now take the time to learn about mine.

Is Giving In… Giving Up?

For months now, I have been on a steady decline and that is saying something, because I was already not in very good shape. I’m not saying this to elicit sympathy or prayers, it is simply a statement of truth.

I’m going to go on a little detour from my main post topic for one second to address my last sentence there, because as soon as I wrote it I realized this has to be said. Please let people talk about their health without feeling like you HAVE to comment on how sorry you feel for them or that you will keep them in your prayers. Now, I am a Christian (see my post called “Faith in the Midst of Pain“), but there are times I feel like I can’t vent about how I feel because I know it will just be taken as a solicitation for sympathy. It’s not! Pray for me, by all means. But when a friend with invisible illness is talking to you about their symptoms, it means they trust you… a lot. Don’t break that trust, don’t make them feel like what they’re saying should be pitied. Ok, back to what I came here to say.

Is giving up, giving in? The short answer is no, but (as we all know) there is no such thing as a short answer (well maybe 2+2). My point is that, there is almost always more to the situation than just saying “Don’t give up, no matter what!”. Here’s an example…

When I got married just over 15 years ago, my husband and I were living in San Antonio, TX. We loved it there, and only moved because of job opportunities and family. If it were just for location alone, we would still be in Texas. Anyway, we honeymooned in the Hill Country and it was beautiful! Not far from where we were staying there is this huge rock, the size of a giant hill (but a rock). It’s a big thing to climb this rock, there were hundreds of people there (like all the time) walking, crawling, and climbing up this thing. Well, up until this point I still didn’t know I was sick. All I knew was that I had back problems, headaches, and that I most likely had carpel tunnel (the only explanation my doctor could give me for my wrist pain). I also knew I had asthmatic problems, but had never been diagnosed and was therefore never given an inhaler. So climbing this giant rock was NOT high on my list of things I wanted to do on my honeymoon. But my new husband really wanted to do it, and he thought it would be a romantic thing to do together. It. Was. Not. Less than half way up I started hurting. He decided to try different motivational techniques, like cheering me on and even negative reinforcement (I put a stop to that one right away). Eventually I made it to the top, but it took several hours. I was in so much pain by that time I had learned something about myself… it doesn’t matter how much someone is trying to motivate me, I can only do what I can physically do. Period. I should have given up. I should have stopped and gone back down as soon as I felt the pain searing through my body. But I didn’t, I allowed myself to be pushed and because of that I had to be (practically) carried down the rock and back to the hotel. I spent the rest of the honeymoon miserable. I don’t blame my husband! He was only doing what he thought was the right thing to do, neither of us knew about my chronic conditions. If we did, we would never have even attempted to make the climb.

So now I’m faced with another rock to climb… mobility. My legs are losing the battle and even though I can walk, if I have to walk for long periods of time, I’m laid out for at least a day (often more). I know that I will have to have a serious conversation about this with my doctor at my next appointment, but I have other people pushing back. I get everything from “You’re too young for a wheelchair!” to “I’m just going to believe that you’re going to get better!”. These are not helpful. Of course I want to “get better”, but reality dictates I look at facts. The fact is that things are going to continue to get worse. I am not just giving up! I will take my vitamins, I will do my physical therapy, I will be an advocate for my disability rights. Getting into a wheelchair is not giving up on myself. It may be giving in, but not giving up.

The Positivity Police

“Just stay positive!”

“No one wants to be around a Debbie Downer.”

“When you have a bright outlook, nothing can look too dark.”

Shut. Up.

I know that being negative all the time is no fun for anyone, especially our friends and family. But there are some people who take it upon themselves to act as our positivity coaches, the one that’s going to pull us out of our “funk” (no matter the cost). Then it turns into a boot camp, instead of a counseling session. Every time they speak, the condescension oozes off of them like Slimer from the Ghostbusters. Guess what, I don’t need it! Surprisingly enough, I am a very positive person. If I were not, I wouldn’t be here.

Let me explain something very important (this is mainly for the able bodied people readers, but anyone dealing with chronic pain make sure to pass this along).

If we complained HALF as much as we felt like it, we would never stop! It would be 24 hours a day, 7 days a week. So, when we mention in any small fashion that we’re in pain, we are in extreme pain. Something different is going on that is over and above our typical pain, and it’s so bad that the barrier has been breached. It is to the point that something has to be said. If we don’t say it, we run the risk of everyone saying “Well, why didn’t you say something?!” when we end up in the hospital, can’t work the next day, and so on. So, do NOT blow it off as just another bout of negativity or complaining. It is serious, always!

To all the positivity police out there… stop it, please. I’m not saying to never pass on a positive message, we appreciate it! I’m saying, don’t expect us to never be negative about our condition. It is going to happen, and we have to be able to feel that. We are entitled to our feelings, as you are entitled to yours! My pain has forced me to see the world in a whole new light, and (even though I 100% believe in being positive) I just don’t need anyone else constantly telling me the best way to stay positive. Now, I’m sure I sound like a huge downer, I swear I’m not! I’m upbeat and tend to be a very strong person (I even pass along some of those positive messages on social media sometimes). My point in all this is when someone has chronic pain, the last thing they need is other people forcing a bunch of anti-negative rhetoric at them. Be an ally for people with invisible illness! Be there for them, don’t treat them like their pain is anything less than what it really is… horrible.