Feeling Unseen On The Inside And Misunderstood On The Outside

Having chronic illness(es) is hard enough to come to terms with in the best of circumstances. Having an ‘invisible’ illness can make the journey even harder if you look fine on the outside.

People doubt your illness, think you just want attention or pain pills. But it goes way beyond that for us. We are judged harshly, even those who look physically sick.

We are judged by the mobility aids some of us have to use just to get from point A to point B. Wheelchairs, walkers, canes, arm crutches, and on and on.

We look fine on the outside so we must be faking, right? Wrong! Here are a few amazing people who also want to spread awareness  about Chronic Illness/Pain, invisible or not.

My name is Karley, I’m the creator of The Spoonie Sanctuary, I’m 25, and I am also disabled. I suffer from Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression. You wouldn’t know by looking at me though. On the outside, you see smiles, happiness and laughter. You see someone who loves life, is happy all the time.

I honestly feel like we are stuck in a catch-22 situation constantly and in more ways than one.

If we look fine on the outside, we are told we must be faking our illnesses. If you look as terrible as you feel inside, we are told we just want attention.

Another catch-22 situation, at least in my case, if you tell someone right away about your illnesses and struggles, they run away so fast. But if you want to wait till you feel ready to tell others your situation, they get upset because you didn’t tell them right away.

We don’t want pity or attention. We just want a little understanding. We want to spread awareness for our illnesses. We want to help others know they are not alone.

Dealing with Chronic Illness(es) can be isolating due to our constant uncertainty if we will have the energy to go out, if we will feel good enough to make plans. For me, I rarely make plans until the last minute because I know how I feel can change in seconds. This makes it difficult for everyone in my life to want to keep inviting me out when more often than not, I end up canceling due to my health, low energy, and pain levels.

I feel like I’m just a huge burden to those in my life. When you get sick, it doesn’t just affect you. It affects everyone in you life as well. Emotionally, and financially. It’s very hard to watch someone you love get sicker and sicker. Especially if there is no name for what you are going through.

Financially, doctors appointments, medication and surgeries are far from cheap. They can put a strain on your income, as well as cause tension about money when all they (and you) see are more and more tests coming back normal. Money being spent without having any idea what, if anything, is wrong.

They want to do everything they can to help you feel better. They begin researching your diagnoses, the side effects, possible treatments and medications. Anything they can find that can give you even a small moment of relief from the pain.

But as time goes by, they, as well as you, may get discouraged. You’ve tried everything you can think of to feel better and yet you are still sick. This is stressful for everyone involved.

Everyone wants to help in some way. Some just listen as you say the same issues over and over again as a way to deal with it. But everyone can only hear the same thing over and over again before they are tired of hearing you talk about it.

So you stop bringing it up and they begin to think you must be feeling better because you no longer complain about your illnesses. In reality, you just know this is your life now. Nothing can change your illnesses, talking about it again and again just gets annoying, no matter how well meaning they are, or how much they care.

I began blogging shortly after I began having health problems, but had no diagnosis yet. I would write as a way to deal with everything, to express myself, and work my way through all of my pain. Emotionally, physically, mentally, I was a mess. The tests continued to come back ‘clean’ and doctors be gan thinking maybe I was all in my head. Maybe anxiety played a role in my physical symptoms because despite the descriptions of the pain, the symptoms, the struggles I dealt with every single day, if that tests keep coming out clean, I must just be imagining it or want attention. But still, for close to two years, I would constantly insist there was something wrong. I knew something wasn’t right, even if the doctor doctors thought otherwise.

Finally, almost 2 years into my ‘journey’ i had my first diagnosis. Interstitial Cystitis. Then came Endometriosis. And last, Pelvic Floor Dysfunction.

Having a name for what was happening to me first made me so happy. It wasn’t in my head, there is actually a name for what I was going through. Shortly after, it hit me. My life, my family, relationships, would never be the same again.

My whole life would change, not because I wanted it too. But because it has to. I couldn’t keep going the way I have been. I went from doing tons of things and always being busy to spending days at a time in bed because I don’t have the energy to get out of bed. Sleeping just to be able to ignore the pain for a little while. Taking a million different medications, trying to find the right combination for even a tiny bit of relief from the symptoms and pain. Taking more meds to counteract the side effects of those meds.

My whole world changed in 2012. I will never be the same again. My family and friends will never be there same again either.

Being sick doesn’t just affect you and turn your world upside down. It affects everyone around you. It changes lives forever.

My name is Vanessa, and I have been chronically ill for 9 years now, and I have the rest of my life to go. I have a multitude of health problems, all chronic pain. My first diagnosis was interstitial cystitis, followed by Fibromyalgia, and Sciatica. Several years later, I was diagnosed with Adenomyosis (which I had to have a hysterectomy for when I was 28 years old). Then there are seizures, unexplained weight-loss, ovulation ovarian cysts that rupture, clinical depression & anxiety… and lastly, carpal tunnel.

It was such a big change from who I was, which made it difficult for everyone to understand in the beginning. I wasn’t on the right medications at that time, so it was very hard for others to ignore the fact that something was, indeed, wrong with me. As I found the right doctors and got on the right medications and treatments my symptoms got better. At least, I was able to be a bit more active. Every day is a struggle in one way or another.

People can look at me and think, “I’m so glad she’s finally better.” In reality, they have no idea what I go through day to day. Whether I talk about it or not; whether it’s obvious or not… Life is a struggle; physically, emotionally, and mentally. It is exhausting.

My main goal is to not be extremely obvious with it. No matter which route you take, people will always have opinions, and they seem to feel it necessary to voice those opinions; even when they aren’t being helpful in the least.
People always know when I am in really bad shape, because I can’t hide it at all. Those are days that really get me down. I hear a lot of, “Oh! You still deal with that?”, or, “Hmmm… I would’ve figured you would’ve gotten that fixed by now.” My favorite has been, “I guess you don’t want to be healed that bad.” Like, seriously? Y’all don’t even understand the stupidity floating around!
I have found it difficult to be internally falling apart, and trying to hold it together on the outside. I know few people who are sincerely there for me, and I appreciate them more than any words can describe. After a while, though, it all becomes so much of a burden on them. Your loved ones feel just as desperate as you do to get you to feeling well again, or to find that one doctor who will look outside the box. To find that medicine that will work well, and without the awful side effects that don’t even make them worth it.

I have really fought internally with the burden I have become for my loved ones. Not only emotionally, but the financial burden as well. When you are chronically ill, your life isn’t the only one that changes, people who are closest to you have their world turned upside down as well; wanting nothing more than to help you but being unable to do anything. They want to try every treatment available that may offer the chance of normalcy. After a while though, the finances aren’t available for it, or you lose hope. You ask why you keep putting yourself, and everyone else through it.

Having invisible illnesses is hard. People think you are lying. Doctor’s think if they can’t find answers right away, then you must just want drugs. You deal with an internal fight of wanting to give up, but knowing that you just… can’t. It has taken years for me to get diagnosed for each of my conditions, and that is not from a lack of me begging for help. I am a “complicated case” is what I’m always told. It’s a sad situation we live day to day.

Mostly, it is easier to just not talk about it. No one can help, and nothing will change; so what’s the point in constantly whining about it? It’s hardest when you lose people because they can’t deal with you being ill anymore, or when people outright tell you that they can’t stand to hear another word about your illnesses or what you’re going through. That cuts deep.

Sometimes, it all makes you feel less than who you are.

Jennifer Carey: I am 37 years old. My body feels as if it were 87 years old and I’m currently in my fourth year of menopause. I survive several chronic pain diseases. I am disabled. These are things that are hard for me to accept. Despite my being in constant pain for the past six years. It’s even harder for others to accept that I am not healthy. While facing my journey the first thing that I learned was that not all disabilities are visible. One does not have to be in a wheel chair or look frail to be challenged. Thankfully some of the diseases I face are visible. Thanks to invasive surgeries, x rays, and cameras. However, not all of my symptoms can be detected by modern medical devices. My appearance portrays me as a young lady in her 30’s going about her day happily. The smile I wear is a mask. I would rather avoid the judgment, disbelief, and I surely do not want pity. I want sympathy and support. If I put on a nice outfit that hides my swollen IC belly, do my makeup which hides the dark circles from exhaustion and pain, and if I do my hair and finish it all up with that smile mask of mine I look as if I haven’t a health issue or concern. All these years and I’m still not sure how I feel about it. I sometimes am grateful that I can hide it all. Other times I wish everyone could see my pain so I would get better treatment from my medical team. I would surely love more support. I find the support I need in support groups with other chronic pain warriors. It’s sad to say but one doesn’t understand chronic pain until they experience it. I urge anyone reading this. If someone you love deals with chronic pain diseases or invisible disabilities please be supportive. The best way to be supportive is to listen. Google your loved ones condition(s), research, and accompany them to their doctors visits if possible. Try not to be frustrated with us. We are beyond frustrated that we are limited in what we can do.

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