I wanted to write about something today that I think will hit home for many folks with chronic illness. Especially the folks that have chronic illnesses that causes chronic pain. I have migraines, and those hurt! I spend days in a dark quite room to help relieve the pain of a migraine. If I have a bad migraine I might have to do PT/OT after because it has left me with weakness. It is no secret I have Ehlers Danlos Syndrome, and EDS causes me a great amount of pain. It causes joint pain, muscle pain, and all over pain from ligaments being stretched that are not supposed to be stretched. Those ligaments also are used too much, and used for things they are not designed to do. It makes my insides hurt from the scar tissue. Always tugging, and pulling on my guts. EDS has caused me to have Bursitis, Arthritis, Scoliosis, and Disc Degenerative Disease all at an early age. That too hurts, and can be frustrating. When you live everyday with joints that sublax, and dislocate you are going to have some pain. Joints that DON’T sublax, and dislocate also hurt. They are being forced out of their normal range of motion. Joints are not meant to do that! Some people think hypermobility, being double jointed or really flexible is cool. Well to me it’s not! It causes abnormal wear, and tear on your joints! I wish I had known as a kid what I know now. Then I am pretty sure I wouldn’t have been flopping around doing party tricks, and always bending like I did to show off. I would take back being the “star student” in gymnastics because I could do what took the others kids months of training. Sometimes I can’t poop for a couple days, and THAT too hurts.
I am not talking about all that physical pain! I am talking about emotional pain! I am talking about the sadness, and grief that comes with having such painful illnesses. Not only do many people with these types of illnesses experience physical pain we also hurt on the inside! No I don’t mean my guts on the inside. I don’t mean being constipated, and not taking a dump for a week. I mean my brain, my heart, and my soul sometimes hurt! They hurt for the ‘what could have been should have been’. I hurt because of what I cannot do anymore. I hurt because I can’t work anyone. I hurt because my honey has to work so many hours, and I can’t work to help him pay the bills. I hurt because I hate my kids having to see me live like this. I hurt because I feel I am not the mother the kids deserve. I hurt because I hate having to be taken care of. I hurt when my house is a mess, and I am too sick to clean it. It hurts that I can’t bake my kids cookies anytime I want. It hurts that I can’t cook huge meals every day of the week anymore. It hurts because being ill costs so much! All the money we spend hauling me around to out state doctors, and my family has not had a real vacation in years. I hurt because my honey works hard, and he always has to use his paid vacation taking care of me. He has to use it when I am sick, in the hospital, or taking care of me after a surgery. I hurt because I feel I can’t be the friend my normal friends deserve. I hurt knowing that my friends too are suffering with illness, and pain. It hurts that sometimes I feel I am not a good sister to my sisters. Not a good daughter to my mom. It hurts that I am that in law that many think is crazy. It hurts that many people that think I am crazy, weird, bitchy, or that I talk too much haven’t taken the time to really know me! It hurts that those same people don’t see the strength, happiness, and the good heart I know I possess. I hurt when I can’t play with my cats and dogs because I don’t feel good. They are always happy to see me, and eager to love me so it hurts when I feel I am not as eager as they are.
It hurts to feel so alone in this illness! It hurts when your extended family is not there to comfort you when you are sick. Some can’t be there because they have families to take of too. But most are just too busy, don’t care, or are too busy living their own life. It hurts when I am in the hospital, and no one comes to visit. It hurts when I have a scary procedure, surgery, or test my family doesn’t call to check on me. It hurts when I need to talk I go through the contacts on my phone, and the only people that would understand are friends that are sick themselves. It hurts that my own mother doesn’t call me she will only text me. It hurts my mother feels her kids “are always sick, and she gets sick of hearing about “her kids being so sick”. Only one of her kids is normal, and without illness. The others are all sick with different illnesses, and medical problems. It hurts that I am not healthy like my mother. It hurts me to know my sisters are sick too! It hurts that in years past I tried my hardest to be there when my sisters needed me, and now the favor is not returned. It hurts when people tell me I need to lose weight. That I would feel so much better! But they don’t see my son that is 6, and no even 40 pounds yet has the same pain. My 11 year old son weighs a normal weight, and he hurts too. It hurts they don’t remember when I was the skinny little short kid that I had pain. It hurts that they don’t try to understand me. It hurts when people think I am only my illnesses, and that illness is all I think of. They are not here with me to see all that I do despite illness. They aren’t here living with me to see that these illnesses are often pushed aside, and I live my life. It’s this “pushing aside” that often gets me in trouble. I often push myself even when a doctor says “take it easy!” But it hurts they base how I live my life on how I answer the question “how are you?” Or what I say when asked the question “how are you feeling?” Normal people just don’t understand that when asked these questions we often answer with something about our health because these illnesses are hear every day! They are here to greet us when we wake up in the morning. They are here throughout the day in all that we do. Then they are STILL here when we go to bed at night. From the outside looking in it seems ‘it’s all we think of’ or that is ‘all that we do’. You may think our life is all about illness, but you don’t live with me! I am sorry you fail to see my strength, humor, and happiness I possess despite being sick. I live my life! I do things that make me happy all the time. It hurts you just fail to see it! It hurts you don’t see me as the fighter I know I am. I am still a wife, mother, friend, sister, and writer. You only see my illness, and that hurts! It hurts when the ones I love the most don’t see my strengths, and the will I have to live! They only see my weakness, all that I do wrong, and my illnesses.
It hurts to always feel I have to hide my pain. I hate I have to feel I have to hide not only my physical pain, but my emotional pain. It hurts that I feel I always have to be strong, and that I am only truly sick when it is convenient for others. It hurts to feel I can’t be honest, and share what being sick TRULY feels like. It hurts I can’t share what all we go through on a day to day basis without being judged. It hurts that many people don’t want to hear it. It hurts that I feel so alone so much! It hurts that often social media, and the things I post about my illness are viewed as a gossip column, and who knows what first. I hurts that for me in my life social media has taken the place of phone calls, and genuine concern. It hurts so much because I only place a ¼ of what I am really experiencing on social media. Rarely does anyone with a chronic illness put the whole 100% on social media. We write just enough to let people know what is going on. I never intended social media to take the place of checking on me, calling me, and asking me in person how I am. It hurts when I hear often hear the words “I read on facebook”.
Typed phrases and words are often misunderstood. It’s hard to get your true feelings across with typed text. Even I having a talent for writing am often misunderstood by something I try to put into typed words. When you are reading typed print it’s hard to see if the person is scared, mad, concerned, happy, or being funny. Many times typed text is taken out of context, and misunderstood. It’s hard to put emotions into words. You can take the same phrase both typed, and spoken people would understand it differently each time. Different people take typed text differently. It’s kind of like taking song lyrics, and asking people what they mean to them. You will get many different answers, and then you can ask the musician what the song really means. Many times it’s NOTHING like what the listener thinks. People tend to contort typed text to fit their own emotions at the time. They tend to twist it into something that fits their personality or what they are going through at the time. This hurts! It hurts that when I type something you may or may not understand. People often don’t ask what I truly meant. I never intended certain people to use social media to keep track of me or what is going on in my life. It’s not meant to use as judgment of how I am feeling.
It hurts that I can’t make these symptoms go away! It hurts that they are debilitating, and I can do nothing about it! It hurts that no pill, herb, supplement, essential oil, a strong will, a good doctor, surgery, meditation, prayer, money, weight loss, if you love me enough, saying sorry, or positive thinking will make my genetic condition disappear. It hurts very bad that people assume all those things or one in itself can cure me. It hurts that some days I try everything I know to do, and nothing can make me feel better. I get tired of my symptoms! I get tired of not just being able to do what I want. Eat what I want. Go where I want to when I want to go. It hurts that some people feel illness is the only way to get attention when being ill is something I hate brings attention to me. It hurts all the things this illness robs me of! It hurts all the things this illness robs my family, and marriage of! It hurts when people don’t see the true me! That I am still me despite being sick! It hurts when people don’t see all the love that I have got to give.
All this hurt often leads to anger, and anger leads to outbursts. Outbursts lead to poor decisions. Poor decisions lead to guilt. Guilt leads to feeling hopeless. Feeling hopeless leads to depression. Depression leads to scary thoughts. Scary thoughts can lead to suicidal thoughts. Suicidal thoughts sometimes lead one to take their own life. And suicide benefits no one! It hurts that I can understand exactly how and why these people feel this is the only way out. Are people with chronic illness depressed? Yes, why yes we are depressed! At one point or another I don’t know anyone with a chronic illness that isn’t depressed or has been depressed in the past. To me if a person with a serious chronic illness says they have never depressed I think they are full of shit! That doesn’t mean they are depressed all the time or that they didn’t get better. Depression is serious, and never needs to be ignored! Depression is different for different people. Some people get better, and come out of depression easy. Other need the help from others, and take longer to get better. But depression is depression, and all of it is serious! The last thing they need is to be judged by others. It’s important to know the signs of depression, and when you see the signs you acknowledge them. After you have acknowledged them then you do something about it! Never assume depression will just go away!
That being said you must realize as a friend or family member this is where your role is very important. The depressed person might need your help! There comes a point when the depression gets so bad for some they feel they are walking alone in a dark scary forest. They feel lost, alone, and scared. You suddenly become scared about the world around you. You forget that this is a big world, and it’s not full of just dark scary forests. You forget that where there is a dark scary forest there is a bright meadow beyond it. A meadow filled with sunshine, cute animals, and sweet smelling flowers. That by just seeing the meadow you feel your spirits are lifted. This “meadow” is different for different people. As is the “dark scary forest”, and it’s important you acknowledge what in life is your dark scary forest. You also have to find your happy sunny meadow.
What scares you, and makes you feel hopeless? This could be being treated like crap by a cocky doctor. It could be being in the hospital. It might be the crushing thoughts you get at a family gathering, and your family treating you the way you DON’T want to be treated. It may be you are in a bad marriage. It might be the negative friendships in your life. It might be not feeling loved, and secure by a family member. It might be that you are getting treated with disrespect by your children. It may be that you no longer feel needed by your children. It may be that your children merely just grew up, and moved away leaving you feeling like you are not needed. It may be that you have an illness with a poor outcome. Or an illness that is terminal, and you are scared for you future. Maybe a friend or family member is sick, and that makes you sad. Maybe your pet died. Maybe you lost a friend or family member. Maybe you lost your home, car, or job. Maybe it is the feeling you get when you feel unloved, and unappreciated. The scary forest is different for different people! What might make one person sad, depressed or lurking on the edge of depression might not faze the next person. This is where you cannot judge. You may not understand it, but know they need you anyways.
Everyone needs someone. Everyone needs something. Everyone needs a safe place to fall when things gets hopeless. Everyone needs a sunny meadow. A meadow filled with things that make them happy. A meadow filled with the people that love you, and make you happy. A meadow where you know you will not be judged, and people will understand you. A meadow that you can go anytime you need to. No strings attached! Where is your meadow? And what is inside it? Who is inside your meadow to help you? Start by asking yourself what makes you happy? When you are down what helps? Who helps you when you feel like this? The meadow is the same as the scary forest. What makes one happy will not do a thing for the next person. One person’s happiness may be another’s annoyance. Make the meadow all about you! The things, people, sights, and smells that make you happy. Because when you need to go to the happy meadow it’s only you that matters!
Know that no matter what happens to you there is always someone that loves you! If you feel you don’t have friends or family that will love you unconditionally FIND people that will! Surround yourself by those that only bring positive to your life! If someone is always bringing you down then leave them in your scary forest. Only bring the ones that improve your life, and attitude to the happy meadow. Realize depression is nothing to be ashamed of! I mean who wouldn't get depressed once in a while living with a painful chronic illness! Be a winner! The difference between a winner and a loser is winners know that winning takes hard work. A winner acknowledges winning takes planning, practice, hard work, love, and dedication. It’s the losers that assume winning will just fall into their lap. Losers don’t want to work for anything, and sit around waiting on someone else to do the winning for them. This is your life! While your life may be filled with pain, illness, and anger at times you are still alive! You are here to live another day, and it’s up to you have you live today! And no matter how hard things get surround yourself in love, and laughter! If you are a normal person never forget that being ill or having an accident can happen to you! Be compassionate to your friends, and family. It is those same people you might need one day if tragedy strikes in your life.
Know that no matter what happens to you there is always someone that loves you! If you feel you don’t have friends or family that will love you unconditionally FIND people that will! Surround yourself by those that only bring positive to your life! If someone is always bringing you down then leave them in your scary forest. Only bring the ones that improve your life, and attitude to the happy meadow. Realize depression is nothing to be ashamed of! I mean who wouldn't get depressed once in a while living with a painful chronic illness! Be a winner! The difference between a winner and a loser is winners know that winning takes hard work. A winner acknowledges winning takes planning, practice, hard work, love, and dedication. It’s the losers that assume winning will just fall into their lap. Losers don’t want to work for anything, and sit around waiting on someone else to do the winning for them.
This is your life! While your life may be filled with pain, illness, and anger at times you are still alive! You are here to live another day, and it’s up to you have you live today! And no matter how hard things get surround yourself in love, and laughter! If you are a normal person never forget that being ill or having an accident can happen to you! Be compassionate to your friends, and family. It is those same people you might need one day if tragedy strikes in your life.