Unsolicited Advice

“Have you tried going vegan? My sister’s friend’s aunt’s mailman was cured of a rare disease by going vegan.”
“Maybe you should exercise more often. That will make your pain go away.”
“I’ve heard that eating a tablespoon of mustard each morning will relieve any health problems. You should try it.”
“Have you tried this medication? I saw a commercial for it on TV last night and thought of you.”
“How about going to a chiropractor? Mine changed my life.”
“Oh, I just read a story about this man who was cured of his illness by using hypnotherapy. Maybe that’s what you need.”

I’m sure many of my fellow chronic illness warriors have experienced the well-meaning friends (and strangers…usually strangers) who try to fix our problems. They hear about our diagnosis and remember that one time when they heard about some magical cure for a completely unrelated problem, and they somehow feel the need to give their advice.

I think it is a natural instinct to want to help people, to solve their problems. We don’t like to see others in pain or going through tough times, so we want to be able to fix them. We hear about pain and want to take it away. We see someone’s life in shambles and want to put the pieces back together for them. I can think of a few circumstances in particular that I would like to fix, people I want to save, but I know that they are out of my control. The problem comes when people overstep boundaries and jump in to try to save the day, often bringing annoyance rather than assistance.

Chances are, if you’re offering someone advice on a so-called cure, they’ve already heard of it. If it’s not super out there (or even sometimes if it is…hey, we get desperate), they’ve probably tried it. And if you’re still offering them advice, then that probably means it didn’t work. I’ll tell you this: I’ve tried the vegan thing…and actually, in my case that backfired majorly without doing anything positive for my health. I do work out when I can, but it usually makes the pain and fatigue worse. So that’s out. I’ve tried all the medications that are advertised on TV, and still don’t understand why we need ads for those sorts of things. Oh, and yeah, they didn’t help. I’ve seen chiropractors, massage therapists, alternative health physicians, and everything else one could suggest. I will admit that I haven’t tried the mustard thing, although that was just some creative license going on there…but I’m sure there are claims about that somewhere.

Truthfully, if doing twelve jumping jacks every day while chewing the leaves of a rare oak tree cured your second cousin’s hair stylist of all her problems, then good for her. But just because a crazy “cure” works for one person, that does not mean it will help the next. Even if it’s a more common treatment, it probably won’t work for everyone. Assuming that chronic illness can be instantly and magically cured with some bizarre concoction that has, to date, helped one person just isn’t very practical. I’m always happy to hear about people who have been relieved of their suffering, but it’s generally not anyone’s place to be pushing treatment ideas on other people, especially when they don’t know the full situation.

Instead of offering your unhelpful advice to the next chronically ill person you see, here are some alternatives:

• Tell them you are sorry for their pain and leave it at that.
• Make an effort to research their condition on your own time. Learn why that magical cure probably won’t help.
• Be there for them. If they ask for help, be willing to serve.
• SHUT YOUR MOUTH. If you don’t have anything nice/helpful/intelligent to say, please keep your comments to yourself.
• If it’s a friend/family member, rather than a stranger you see in the grocery store, stop by with a care package of comforting things. {And by this I do not mean whatever pill/remedy/magic you’re trying to shove in their face.} I’m talking about happy things that they would actually like to receive. Socks, candles, food, movies…tailor it to their needs/preferences. Even a simple card can go a long way in showing that you care.
• Be a listening ear. Most of the time, we don’t want advice. We don’t want you telling us every five seconds that we’re going to get through this, and this has all happened for a reason. We don’t want to hear about your ideas for what condition we might have or what you think might help us. We just need someone who will sit and listen, offering feedback when requested but not being pushy.

The bottom line is this: Don’t try to offer a fix-it-all solution unless you are directly asked for advice. In the world of Google, most reliable treatment options are accessible online. If not, the doctor of a chronically ill person has probably brought it up already. Sure, there are those rare instances where there is an up-and-coming therapy that isn’t well-known or advertised, but unless it has been researched thoroughly, I for one am not one to jump right in and try it. I have doctors, I have books, and I have the wide vault of information at my fingertips in the form of the Internet. I really don’t need to hear about your brilliant cure…but thanks for sharing.

The next time you’re tempted to offer some stupid suggestion about how to cure someone’s chronic illness, please do everyone a favor and hold your tongue. It gets old and tiring after a while to hear the dozens of weird and unsolicited remedies that have not helped. If you must say something, please simply offer your sympathies and move on. Thank you very much, and I hope you have a great day.

P.S. Have you heard of superglue?? I hear it’s a good cure for ignorance and dumb comments…

Stares, Questions, and Comments

I had an interesting conversation with the psychologist at my not-so-wonderful appointment last week. She was telling me about a show that she had recently seen (Violet). It was about a girl who had an accident that disfigured her face, so people often stared at or teased her. The psych related this show to my own life because of the way my leg is swollen and disfigured. She then asked me if I’d rather have people stare and say nothing or just ask about it. I thought for, well, 0.2 seconds, and then gave my answer-I’d rather them just ask.

I often see people staring at my leg, or doing the whole “look when I’m not watching” thing, where they’ll sneak a glance after I’ve walked past them or when I’m looking the other way. I want to say something snarky, like, “hey, take a picture so you can stare all you want,” but I refrain, thinking of the times when I see someone who is a bit different. I think looking or staring is a typical response for most people, regardless of whether it is right or socially acceptable.

I’m really not a fan of the stares, but I feel more comfortable about people looking at my leg when I can explain what happened first. That way they don’t make any assumptions or judgments simply based on what they see. I can tell them about my accident and my RSD/CRPS and let them into my life a bit. Sure, people don’t usually want to stand around listening to all of that stuff (which is why I usually just say, “I have a chronic pain disorder called RSD,” and leave it at that), but sometimes they’re really curious and willing to learn. I like those kind of people because then I’m able to spread awareness about this monster.

The comments people make are usually worse than the stares and questions. People asking if I knew my leg was so huge, or trying to compare my situation with that one time when they got a paper cut…yeah, not helpful. Or how about the people who say I can’t do things just because I’m on crutches? Ooh, that makes my blood boil. I know my limits and I know what I can do and what might be a bit more challenging, so I don’t really need the opinions of others to help me figure that out.

So, if you ever see me roaming around a store or taking a walk down the street, feel free to ask questions. I’ll even answer the dumb ones, like if RSD is contagious (for the record, it’s only as contagious as a broken leg). Once you’ve taken the time to become educated on my condition, then you can stare all ya want…but keep your silly comments to yourself, please and thank you.

 

Shopping and The “Someday, Maybe” Pile

Today I enjoyed a lovely day out with my mom and sister. We did some shopping, some food sampling (gotta love local food samples day!), and some driving around town. I, of course, had many people ask about my leg while we were out and about. One lady said, “oh, that’s rough in the summer!” I smiled, said, “yeah,” and kept on shopping. A few minutes later, she appeared by my side again. “So, what actually happened?” After telling her, she said, “Oh, okay. I had plantar fasciitis one time and my foot was like yours so I totally understand.” Um, okay. The comments continued about how it’s a good thing it’s just the beginning of summer (I guess they assumed this was just a sprain and I’d be good to go by next week?) and more questions popped up from other strangers as I made my way through the store. I still think I should just get a t-shirt that explains everything so people don’t have to ask.

During our shopping adventures we went to Kohl’s, one of my favorite places to buy clothes. I usually manage to find at least one thing to add to my ever-growing clothing collection, and today was no exception. Only today, my purchase of jeans went to the “Someday, Maybe” pile instead of being thrown in with my normal clothes.

The “Someday, Maybe” pile is an assortment of clothing that I am unable to wear right now because of my giant foot and sensitive leg. It mostly consists of various pairs of jeans, but there are some other items thrown in as well–long dresses, sweatpants that are too bulky to roll up…things like that. Basically, everything I was able to wear before my flare except for shorts gets tossed into the pile.

I think that in a way, this random group of unworn clothing is a symbol of hope. It means that I haven’t given up yet because I am still looking forward to the day when I am well enough to broaden my wardrobe choices and be comfortable in any clothes. Looking at the pile stirs up excitement in anticipation of things to come, because someday, someday, those clothes will be back on my body, displayed proudly as a reminder of what I will have overcome.

I plan to keep my “Someday, Maybe” pile and will continue to add to it until I am given a definite reason to give up hope. While I am not oblivious to the fact that a lot of times RSD/CRPS never reaches remission, my hope is still alive that maybe, just maybe, I’ll hear that great “R” word again. After Monday’s appointment my thoughts may change, but hey, I still have 2 more days to keep the hope burning.

Speaking of Monday’s appointment, tomorrow will be spent traveling all day so I’ll be MIA for a bit. We have a lot planned for our short trip but I will be sure to give a full rundown of this pain program evaluation when I’m back!

Wishing everyone a low-pain, happy weekend 🙂

Grocery Shopping: Crutch Style

I have always loved grocery shopping. After I got my license I used to hop in the car and drive to the store whenever I needed a break from life. I’d grab a cart and just walk around, maybe buying one or two items but really just browsing to clear my mind. Now that I’ve been on crutches for the past couple of years, this area of my life (like pretty much everything else) has changed a bit. I still jump at the opportunity to go to the grocery store, but shopping brings its own challenges these days.

My biggest concern when shopping, especially when buying groceries, is the threat of slipping. Most stores have shiny floors rather than carpet, which means that spills and puddles, AKA fall hazards, are much more common. Today I saw a worker holding a mop and immediately became more aware of the potentially hazardous condition of the floors. Even with my beloved Non-Slip Crutch Tips I am still on guard whenever I encounter a slippery surface. To deal with this, I stay close to the cart and walk near the shelves so that I can have something to grab onto if a fall were to occur.

Another thing about grocery shopping on crutches is the fact that a lot of people either stare at my leg or make comments to me. They ask questions, inquire if I need help, and wonder how I am able to get around the store. Last week I had a woman suggest that I use an electric shopping cart (the ones that you sit on and ride around the store) rather than hobbling around. Often employees ask if I need someone to push my cart, even if I’m only alone for a few minutes. Since I can’t drive I am typically with someone else when I shop, so the need for extra help is not an issue. When I was younger and first diagnosed, a woman asked my mom if she had taken me to the doctor or if she knew that my leg looked so horrible. I just can’t believe the things people say. Sometimes people start interesting conversations, which is pretty cool, but when the annoying people decide to open their mouths, all I can do is give a polite smile and hobble on.

By the way, did you know that it is possible to push a cart while on crutches? With two hands, even! Obviously you still have to make sure that you don’t hit any slick spots, but it is not impossible! I do get weird looks when I do this, but hey, I’m not about to let this silly leg stop me from doing what I want. Of course, when I’m shopping with someone and they offer to push, I’m usually not too likely to say no…

Even though I have to do things differently and brush off weird comments, I still refuse to let these things overpower my enjoyment of shopping. The act of discovering new foods and embracing the busyness of the grocery store is both exciting and comforting, and I look forward to the day when I can once again drive myself to this beautiful place.

(P.S. I realize my love for the grocery store may be slightly abnormal…sorry, I just can’t help it! Probably goes with my love of food 😉 )

Ignorance

“Oh, your foot will heal up faster than you think. I sprained my wrist once and it healed so quickly.”

“I see you’re on crutches now…well, you’ll be in a wheelchair soon!”

“Is your leg in a cast or something or is it just really deformed?”

These are just a few of the comments I’ve received from grown adults in the past week or so. Not college students, not middle schoolers. Grown adults. These comments, and more, stem from a position of ignorance and assumptions. I try to take it all with a smile and gently correct them, but sometimes the things people say are just plain ridiculous.

First of all, let’s not make assumptions here. Assuming that I’ll be back to normal in no time? Well, I’m not sure what kind of timeline this lady was thinking, but I’m pretty sure 20 months doesn’t fall into the category of “quick healing.” The comment about being in a wheelchair? Well, I’ll give this man credit because he was rather old so many of his friends probably are using wheelchairs, but to tell someone that their condition will worsen without even knowing a thing about their life? What?! Plenty of people have seen me and, upon learning my story, confided that they assumed that I had a simple sprain or something minor.

The next issue here is comparisons. I’m sorry, but my incurable chronic pain disorder does not, in any way, compare to your sprained wrist or papercut. It does not involve a simple fix, and it is not temporary. I do have some level of grace in this situation because I realize that everyone has a different “worst pain in your life” moment, and to some people that sprain really might be the worst pain they’ve ever experienced. But don’t try to tell me that because your sprain healed, my injury will as well.

Lastly, do people even think before saying things? Telling me about how awkward, deformed, or disgusting my leg is doesn’t do anything productive. Asking if I’ve seen how bad things look or if my condition is contagious-really, people?! I just don’t understand how intelligent people can say such ignorant, stupid things.

Here’s the deal-unless you’ve personally walked through what a person is dealing with, don’t try to say you know what they’re going through. Don’t make assumptions, don’t compare your life to theirs, and please, oh please, think twice before that comment rolls off your tongue. Because while it does make for good stories about the stupid comments people say, over time those words build up…and it gets old.

Okay, end of rant. Be kind and be considerate, people. And have a lovely day 🙂

Stop the Assumptions. Please.

Oh. My. Gosh.

Today I had my first experience volunteering at a local school for kids with special needs. My class is partnering up with them to help in their Special Olympics gym classes, and near the end of the semester we will be helping at the actual Special Olympics Spring Games event on campus.

I was already kind of concerned when my Professor told us that we would be doing this as a requirement. Since we help in a gym class, I wasn’t sure what they’d let me do with my crutches. My Prof assured me that everything would be fine and that I should go, so I did. I went, not knowing what to expect, and prepared myself for the possibility that I might be unable to participate. I guess I didn’t prepare myself well enough for the words that would come out of the mouths of the staff there.

In the first 5 minutes I was at the school, I talked to three different women. The first one I saw asked why I was there. When I told her I was going to help with the Special Olympics program, she gave me a strange “are you sure?” type of look but told me to wait in the hallway until the Physical Therapist who was in charge came down. While sitting outside, another woman, a teacher, came over after talking to the office workers. “Hi, what’s your name?” She asked. I told her, then after telling me hers she said, “uh, I’m not really sure what you’re going to do here. Why are you here? Don’t you know this is a gym class you’re volunteering in?” I told her I’d wait and see, and she told me that the PT would be there to talk to me soon.

Well, then the PT came walking down the stairs. “Oh my. How are you going to do anything?” She didn’t say her name or anything, she just went straight for the crutches topic. “What did you do?” I told her about the pond jump and the RSD, then she looked at me, puzzled. “Hmm…well I don’t think you’ll really be able to do anything to help here, but I’ll get you a rolling stool so you can sit and watch. I mean, I don’t want to isolate you, but really, I think you’ll just be able to observe.” She told me that she was initially going to have me go somewhere and help her, but once she saw my crutches she changed her mind. At this point I was trying to hold back tears, ready to bolt out the door and begin walking back to campus (which, in reality, wouldn’t have worked since my school is miles away and it’s 5 degrees out, but whatever. I wanted to be anywhere but there). I decided to tough it out and give it a fair try. Eventually the PT led me down to the gym, placed the stool down, and told me to sit there while she gathered her things.

The gym that we were at also served as the cafeteria for the other part of the school, which seemed to be a typical elementary school. The PT told me that the kids were in trouble so they missed recess and instead were being lectured by the Principal. I wasn’t sure what they had done, but the way he was speaking to them made me feel uncomfortable. He told them about how they wouldn’t make it far in life and how most of them might not even make it through high school. I didn’t fully listen to the speech because I didn’t want to intrude, but what I caught of it made my heart break. Then, when it was time for them to leave, their teachers came in and yelled at them some more. The way these kids were spoken to was the furthest thing from encouraging. I believe in lifting others up, especially kids, and not tearing them down. Apparently these people didn’t have the same philosophy. My heart continued to sink as I listened to the conversations around me.

So anyways, back to the real reason why I was there. The PT started to set up for the gym class once everyone had cleared out. Since she had told me to sit and watch, that’s what I did for the first couple of minutes, not wanting to go against what she said. After a while, though, I realized that I was more than capable of doing what she was working on, so I asked if I could help. I ended up moving some small basketball hoops across the gym to their correct location and setting up some other things. See, already proving that I was worth more than a sack of potatoes sitting on a chair.

I felt awkward during our time with the first group of kids because I didn’t quite know what to do or what to expect. We had about 5 kids, preschool aged, and they did various activities such as bean bag tosses, basketball, and walking on a balance beam. I partnered up with the PT and we worked with a kid together. Things were seeming to get better so I was feeling more confident by the end of that session.

But then we went to get our next group. I went into the classroom and stood by the side. “Oh, you’re gonna be a great help,” the teacher said to me with obvious sarcasm and a disapproving look on her face. Wow, way to judge a girl without even talking to me. “Actually, she has good balance and did fine in our last group,” the PT chimed in. I was so thankful that she was starting to realize my abilities and stand up for me. But still, I was shocked by how these people chose to make assumptions about me just because I was on crutches.

The second group went well, and I definitely proved that teacher wrong. I was helping the kids and doing everything the rest of the group did, including playing with the parachute and walking in a circle while holding onto it (which, I might add, takes a lot of coordination-using one hand on crutches, one on a handle, and walking around while singing and trying not to step on the parachute. BAM.)

By the time we had our third group I was getting the hang of things. The PT told me and the other college girl there to be partners with the most adorable little boy ever, so we helped him through the obstacle course. By the time we got to the basketball station, the other girl had left to help someone else so I was flying solo with the little boy. He was so sweet and loved his basketball! I was happy that I had the chance to work one-on-one for a bit since that is how the next few weeks will probably be (yes, I have at least 3 more weeks of this).

So anyways, that was kind of a long rant, but it really disturbed me how negative everyone was toward me. You’d think that people who work with kids with disabilities would be more compassionate and understanding, maybe even better with their words toward people with injuries/disabilities, but no. It was the complete opposite. I was happy to see that they were mostly positive when speaking to their kids with special needs(using positive reinforcement rather than saying “no” or telling them what they did wrong), but the overall atmosphere was uncomfortable due to their attitudes.

I wish people would just learn to not judge people by their outward appearance. Crutches, wheelchairs, walkers, and other assistive devices do not automatically make people incompetent or unable to do anything. So check yourself before you make assumptions.

I really hope the next few weeks are better than today’s experience. Because honestly, I have pretty thick skin, but I don’t think I can handle it if the negativity continues.

Thanks for stopping by. Hopefully the next post will be filled with good news and positivity 🙂