Why do most people think everyone in a wheelchair is paralyzed?

During a recent conversation, it dawned on me that so many people in wheelchairs are capable of walking/standing, but are afraid to because of what other people will say. There has to be a way to bring awareness to this and stop the fear of persecution.

There is this concept among the able-bodied that anyone in a wheelchair is paralyzed, which is incredibly narrow minded. But think about it… have you seen someone in a store using the electric scooters and then stand to get an item off the shelf. How does that make you feel? When you see someone in a handicapped spot (even with a placard) walk into the store, do you automatically think they’re faking or using a tag that doesn’t belong to them? Think hard, we’ve ALL done it at one point in our lives.

The truth is that people with invisible illness often need assistance, but not necessarily every day. That person you see walking in to the grocery store could very well have been completely unable to walk the day before. That person using the scooter, most likely is having a bad pain day and wouldn’t be able to get their errands done if it weren’t for the help. Often reaching for something off a high shelf can be just as painful as walking around the store, so standing to get it is the better option.

Yet… we shy away from it because of all the judgemental stares. We will park without our tag, just to keep people from being cruel. Bullies come in many forms.

Then there are those of us that use a wheelchair on a regular basis, but are NOT paralyzed. We can stand if needed and sometimes sitting all day is just as bad for us as walking. We may have to get up just to stretch, but that’s not what people see, so we confine ourselves to the chair and pray for comfort. That fear is brutal!

Personally, I use a wheelchair any time I would have to stand our walk for a long time. If I don’t, my knees and hips give out and I’m considered a fall risk. So I have to use the scooters at stores, especially if I need several items. Otherwise my pain will be too much, even with my cane. My manual chair is not as helpful in stores, so the scooter is the best option. I’ve started using my cane to get in to the store and keep it with me on the scooter. This is no easy task! But it is a visual for people that I really do need mobility assistance.

What NEEDS to happen is an awakening of understanding to the struggle of people with invisible illness! We need to dispel the myth that everyone in a wheelchair is paralyzed. Yes, some are… but many are not! To judge someone without knowing their circumstances is plain and simple bullying. It is ableism and needs to stop (even among those with disabilities). It is not our place to judge.

(On a side-note. If you’re not disabled and take up a handicapped spot just because the lot is too full, or you just don’t feel like walking that far… stop it! Seriously, leave those spots for people with disabilities. Even if you’re just running in somewhere “really quick”, that’s not a good excuse. You never know when someone with a real need will drive up.)

So, don’t be afraid to be yourself. Stand to get what you need, stand to stretch, and most importantly stand up for your right to stand.

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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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Fear and Loathing… in the World

Fear is like a lie. It might start out small, or insignificant. But once another lie or fear rests on top of the other, a cycle is formed. It’s like trying to fix a hole with scotch tape, you have to add more and more. But in the end, all you’re doing is making the problem worse. Those layers will eventually be stripped away and reveal the damage done.

The opposite of fear is not courage, it’s knowledge.

We’re facing so much fear in our world right now. Fear of what we don’t understand, fear of other cultures, fear of brutality and even death. What would happen if education and understanding took it’s place? What if people took a step back and said “I choose not to be afraid of the things I don’t know, or can’t see.”

I have seen it so many times! Bullies that push people around, just because they’re afraid of what other people will think if they didn’t. Abusive partners, fearful of being alone, lashing out and trying to force love. Disabled citizens that choose not to park in the handicapped spot (even with a placard), out of fear from threatening notes and harsh stares. People afraid of their sexuality, because they’ve seen how others were treated. Young men that fear police brutality, and honest police officers that fear retaliation (for the actions of others). Refugees without a home or food for their family, fearful of what the future holds. A world in fear of war, torn apart by the deeds of a select few.

“The enemy is fear, we think it is hate; but it is fear.” – Gandhi

I am in NO WAY condoning the actions of bullies or abusers! Fear is not a justification for misdeeds and actions. This is all about opening our mind to what the real problem is!

Some people might ask, what qualifies me to write about this? I write a blog for people with disabilities and invisible illness. What does this have to do with that? To those people, I would say this… I may not be a scholar or civil rights activist, I may not even have it “right”, but I certainly feel like the way were going is wrong. I live every day in pain, I work tirelessly to advocate for myself and others with chronic illness. I have seen how fear can grab a hold of a person and make them want to just give up. My own fear has brought me to the brink of death; and yet it was the fear of leaving my children without a mother that brought me back. I have loved ones in law enforcement that I fear for on a daily basis, and I see how much pain they go through every time there’s news of another shooting. I am not here to say one group is better than another, I am here to say that until the cycle of fear is broken, we will never heal!

“The only thing we have to fear, is fear itself.” – FDR

Education is key! I’m not just talking about kids in the classroom, I am talking about unbiased news reporting honest headlines. I’m talking about flooding the internet with true stories, from the voices of those going through it. Muslim and Christian leaders, coming together and having civil conversations. Accepting that yes, Black Lives MATTER, without (even once) thinking that that means other peoples lives do not. Taking a step back, realizing that any time you say “all of this one particular group is…” is not productive and feeds into fear! This includes police! Not all police are racist, or are out to hurt anyone. They’re afraid, just like everyone else, and (unfortunately) some of them can’t handle the fear. Knowing all this can be the best deterrent to violence available.

We CAN break the cycle of violence, and the fear that drives it forward! So, even if you haven’t taken my words to heart, at least listen to one of the wisest beings in the universe…

“Fear leads to anger… anger leads to hate… hate leads to suffering.” – Yoda

On a Personal Note

Most of my blog posts are about awareness for invisible illness, social acceptance of disabilities, food allergies, and so on. But it is also important for me (as a person) to just let everyone know how I’m doing and what is going on in my world. It is very possible that this is arrogant on my part, but it’s my blog and I can do what I want. 🙂 Just kidding, kind of.

Well, I had a follow-up with my new Rheumatologist yesterday and sure enough, I do have Rheumatoid Arthritis (possibly Lupus as well). Some of the tests for Lupus were inconclusive, but everything for RA came back positive. They’ll be keeping an eye on the Lupus, but going forward with RA treatments. As for the Ehlers-Danlos diagnosis, I am still waiting for that to become official. She agrees that I “most likely” have it (I know I do, and I can tell she does too, but just won’t say it). She is insistent that I get genetic testing before she can move forward with an official diagnosis, even though I know that H-type does not show up on genetic testing and may not be covered by my insurance (we’re still working that out). Mine is a typical story though, one I’ve heard over and over on-line. People go years without a diagnosis, just to have every doctor shoot down what they KNOW to be true.

That’s one of the main reasons I’m doing what I’m doing! People just don’t know how devastating it can be to KNOW you have this debilitating disease and still have doctors question you. Just because we’ve sought help and answers on-line, does not mean we’re hypochondriacs. Just because we’ve spent countless hours researching symptoms, does not make us obsessive. Just because we’re relentless in our pursuit of a diagnosis, does not make us pushy patients. If we don’t stand up for ourselves, we eventually won’t be able to stand at all!

Ok, off that soap-box (for now). The other big thing that came out of my appointment was a prescription for mobility assistance. Yep, I’m getting a scooter! Not something I will use all the time. I have every intention of keeping attempting to walk for as long as my body will allow me to, but recent activities have been extremely difficult and kept me bed-ridden for days. So, when I told her about it, she agreed I needed that option. I have people coming to my house at some point to asses my mobility needs… yippee! Come see my messy house that I can’t clean because I’m sick! I have blankets I can throw over stuff, that will work, right? The other important thing is that my temporary handicapped placard is being upgraded to permanent. No more renewals and begging for a new one. No more waiting months for doctor visits and having him tell me that they really should just go to people that “really need them”, just to have him reluctantly write one for a couple months because I’m in extreme pain. Justification… I have to say, it is sweet.

Some other (smaller) things to come out of the appointment would be that she took me off of a med that was probably the cause of some severe dizziness. At one point this past week I actually had to be helped out of church because I almost fell over, fun times. My Sjogren’s isn’t getting any better, but we’re going to see how things go once my other treatment starts. I have to get a few immunizations before I can even begin the infusions for the RA. She also gave me steroid injections in my knees, which hurt like CRAZY! I’m hoping it’ll be worth it, because the next day it still feels like the needle is in there! Ugh.

I do have one other big “story” to tell, but I’m going to do so in a separate post. It was a pretty upsetting situation and I have had to collect my thoughts in a big way before posting about it. But no worries, you’ll get the full story very soon! For now, I wanted to give you a little insight into how things are going for me. Other than a very stressful situation (again I’ll post about that later), things are not too bad. Getting a diagnosis is always bitter-sweet. Knowing what’s wrong is always good, but finding out how they’re going to treat you can be daunting! Changes in medication, infusions, steroid injections, all kinds of “good times” ahead. I’ll make it through, I always have and I always will. For now, God bless and have a wonderful, pain-free day!

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.

There’s Simply No Excuse.

We’ve all seen them, those inspirational pictures and stories of people who have endured great odds to become successful. People with disabilities, but still managed to overcome and win a sport or defy expectations. These are often (ok, pretty much always) followed up with the phrase “What’s your excuse?” and I’m here to say, “Who are you to ask?”.

Some people may find motivation in that medium, but most of the disabled community find it demeaning. Think about it. Unless you’re looking in a mirror, you have NO idea what that person goes through every single day. There are some amazing people out there with disabilities, that do incredible things with the hand that has been dealt them, but to judge others lives based on what how those people live is not doing anyone justice. Here are a few examples.

Morgan Freeman has Fibromyalgia. Many people do not know this, but it’s true. He has said that after a car accident, tendons in his arm were so badly damaged that he could barely move and the Fibromyalgia developed as a result. So, how can he still work and make insanely incredible movies when other people with the same condition complain about even working? Because no two people are the same! He has different symptoms and I know for a fact he uses his pain in his performance. He also smokes a lot of medical weed, he has made that very clear in interviews. It’s his main medication and it works.

Rick Allen (the drummer from Def Leppard, you know… he’s only got one arm). Seriously, I cannot tell you how many times I have heard this one come up! “Well, if Rick Allen can do it, I bet you can too.” Yeah, well I am not Rick Allen. He’s a unbelievable talent and how he does is frankly beyond me, but saying that anybody can do anything just because someone can drum with one arm, is not motivating.

Paralympians. I have SO much respect for all the athletes at the Olympics! I cannot even imagine all the hard work that goes in to getting there. Especially for those competing in the Paralympics. Each and every one has obviously endured some amazing journey to get where they are, and there’s no doubt in my mind that most of them deal with pain on a daily basis (as do many of the athletes in the Olympics as well). That being said, each and every one of those Olympians/Paralympians are unique! Their conditions are constantly monitored by doctors and specialists. To suggest that another’s pain is less valid because someone with the same condition can win a gold medal, is degrading and disrespectful.

Elderly individuals that stay fit. I love to see senior citizens doing yoga, jogging, and lifting weights. I think we all do. It means they’ve either taken good care of themselves throughout their whole life, or they’re doing everything they can to add years onto their life now. This one means a lot to me. As many of my readers know, I recently lost my Grandmother. It was a difficult loss because we were at odds for many years and only recently became close. I miss her dearly and would give anything to see her up and running or doing yoga. I just cannot stand the images I see that say “85 years old… what’s your excuse?” and have an older gentleman with bulging muscles. Well, I’m 39 and I am now using my Grandma’s old walker. This is not a choice we make. I am not sitting around, eating bonbons, and just feeling sorry for myself. If I could do what these amazing people are doing, I would (maybe not the bulging muscles).

There are plenty of other examples I could add here, but honestly I will just get overly riled up and that won’t benefit anyone. This is an emotional topic for those of us with invisible illness, because we deal with a constant barrage of “motivational” images on a daily basis (especially on social media). We’re going to see it a lot more during the Paralympics, so I wanted to get this out there and make sure people really understood the true damage they cause. Now, there is no excuse for posting it.