A Letter To My Younger Self About the Mysterious Symptoms That Will Change Your Life

A Letter To My Younger Self About the Mysterious Symptoms That Will Change Your Life

 

Dear Younger Self,

I understand that you are having trouble dealing with the strange symptoms you are experiencing. As a 16-year-old high school student, you shouldn’t have to worry about chronic pain, intermittent numbness and tingling in your extremities, chronic fatigue, and increasing weakness. You should be focused on your high school cross-country and track career, making friends, dating, and enjoying life; but, instead you are becoming angry, depressed, and isolating from others. I’m writing this to tell you to get ready because it doesn’t get better.

You will go through years of pain. You will experience new symptoms regularly that your doctors will not be able to be explain. You will be told more than once that you are “crazy”, “a faker”, or that it is “all in your head”. Your parents will be told to get you a psychiatrist. You will suffer through this torment for years before getting any answers. You will be labeled a problem patient by your doctors. It will not get better. You are just beginning this long, painful road of uncertainty, and it will take a enormous amount of strength and persistence before you get any answers or support from the medical community. Even after you get a formal diagnosis, you will still have to fight, so don’t put away your gloves. I’m telling you, it doesn’t get better.

You will go to college, and work a professional career for a while, but it will be a struggle. You will try to hide your symptoms from others and “pass” as an able-bodied person, but you will fail. It will get harder and more painful. Eventually, you will find yourself fighting to prove your disability to a panel of able-bodied people who don’t understand you just to survive financially. You will get some support from your doctors who finally diagnosed you after 15 years of searching; but, due to your rare condition, some of your doctors still won’t understand. They won’t support you or yoIMG_1070ur needs, and you will have to fight. It will be exhausting because by now the fatigue, weakness, dysautonomia and pain have made it so difficult to do even the most basic tasks. The mental fatigue brought on by the immense amount of paperwork you will have to fill out just to prove how sick you are will be overwhelming. Few people will understand the impact of the mental fatigue on someone fighting to prove themselves on a daily basis. I’m writing to tell you that this situation you find yourself in now is just the beginning, and it does not get better.

It does not get better. Your symptoms will increase, and your functioning will decrease. You will experience new symptoms regularly, and every medical emergency or procedure you encounter will increase your symptoms and change the face of your illness. You will have to re-arrange your entire life plan, and you will never realize many of the goals you had as a young person. But, I’m writing this letter to let you know that it could be better than it is for me now. You can save yourself a tremendous amount of heartache if you change your ways, but you must begin now.

You will want to isolate yourself from everyone. You will want to shut out your family and friends, and you will begin to build a wall that will only strengthen over the years. Because of the negative reactions from the doctors, and because you have no idea what you are dealing with, you will stop talking about how you feel. You won’t want to let anyone in for fear of rejection. You must not do this! This is the time to reach out. Reach out to your family and the few friends who have stuck by you. Reach out to the new friends you have met on the wheelchair basketball team that you will join once you realize running is no longer an option for you. Tell them how you feel and let them help you. You cannot do this alone because if you try, you will become depressed, isolated, and angry. You will have mood swings and lash out at your family. You will begin making poor choices and you will stop caring about yourself and your well being. You must let those who love you know how you feel so you don’t feel so alone.

“Your symptoms will get worse, your functioning will decrease, and you will eventually find out that what you are dealing with is a lifelong, chronic illness that has no cure.”

You will want to stop seeking answers. You will go for years without going to the doctor for fear of being laughed at again, or told you are “nuts”. You will suffer in silence with no treatment to ease the pain. You will write off all doctors and vow never to try to figure it out again. This will only increase your problems down the road. You must continue to fight, regardless of what the doctors say. If one doctor shuts you out then search for another one. Don’t get discouraged. You will eventually find the doctor who has the answers, but it will take time and patience. The longer you wait the worse your symptoms will become, and they will not be able to be reversed. Find your doctor sooner rather than later, and begin to learn to manage your health conditions before they become so disabling.

Reach out to your family, friends, and the community for help. Don’t try to do this on your own because you will become bitter toward society. Get involved with support groups (whether in person or online) with others living with chronic illness. Try to find out as much as you can about your symptoms, and educate yourself and others so that everyone can better understand you. You will want to overdo it just to “fit in” with the rest of the crowd. Don’t push yourself, and let others know how you are feeling rather than keeping it all to yourself. Tell them when you are having a bad day, and don’t try to push past your limits just to please everyone else. Explain what is going on so others understand, and take care of your needs. If you don’t do this, then you will cause yourself years of unneeded pain, and eventually you will come to resent your friends and family for “making you feel that way”. You will find that your true friends will understand, and those that do not were not worth the effort anyway.

I’m writing this letter to tell you that it does not get better. Your symptoms will get worse, your functioning will decrease, and you will eventually find out that what you are dealing with is a lifelong, chronic illness that has no cure. It does not get better, but this letter is not meant to discourage you. Just because your symptoms do not get better, it does not mean that your life gets worse. You will find a great husband who supports you through every trial you will face in life. He will be there for you in your lowest moments. Let him in, and tell him how you feel. Don’t try to treat him like you do the rest of your family and friends. You will become closer with your parents and you will learn to include them in your life. Do this sooner rather than later because you will need that support. You will find the friends who will have your back no matter what. They will be few, but they will be lifelong. You will be blessed in many ways, but it will be easier if you follow the rules I have outlined above. It does not get better, but you will survive and come out a stronger person than you were before. This illness will teach you many things. It will teach you patience, compassion, confidence, and it will teach you how to love unconditionally.

As you grow with this illness, and as you learn what it means to have a disability, understand that you are entering a whole new world. You have a choice. You can choose to embrace this part of you, or you can try to run from it. However, I will tell you, this illness will take away your ability to run. You will not be able to run from it. It will follow you wherever you go, and eventually it will make you pay attention. If you try to avoid it as I did, you will fail, and it will take years to undo the damage that will be done. Let go of the running, and learn to live your life as yourself. Be true to who you are, and don’t let anyone tell you otherwise. You are not a “faker”, and you are worthy of the medical assistance that you seek. You will find it, don’t give up. It doesn’t get better, but it will make you a better person, and it is worth it in the end.

Sincerely,

You, in 18 years 🙂

 

My wheelchair is not a prison!

This is a wonderful post written by Nina Childish! As I sit here anxiously awaiting the arrival of my new power chair I can 100% relate!! Please click on the post below to check out her blog!

nina childish

Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple…

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The Herdless Zebra: When You’re Too Rare to Fit In with the Zebras

The Herdless Zebra: When You’re Too Rare to Fit In with the Zebras

So we know that Zebras are rare, but what happens to those Zebras who are so rare that the other Zebras don’t even know who they are? I’ve been having a lot of medical setbacks lately, and have been struggling to get answers. We all know that the doctors aren’t always the best at understanding our rare conditions, so it is difficult to rely on them for support. Most times they simply add to the multitude of frustrations that we deal with on a daily basis anyway. We generally seek out advice and support from our peers, those who have been through exactly what we are going through. Zebras can sometimes find this a bit more difficult since we are by definition, rare. So, we tend to turn to social media outlets to find others in our situation.

The internet and social media have made it possible for rare disease sufferers to more easily connect with others around the world who have the same condition. We can provide support for each other, discuss different treatment options, and be a soundboard for when we have to make difficult medical decisions. Online “Spoonie” communities have popped up everywhere to help people with all kinds of ailments cope. There are communities for EDS, Mitochondrial Disease, Dysautonomia, POTS, Lyme Disease, Fibromyalgia, and so many more. Many members of these communities say that without the support of their online friends they would feel isolated and misunderstood by everyone. But what do you do when you have such a rare diagnosis that even the online communities for rare diseases don’t know what it is?

This is the situation in which I find myself. I have a metabolic disorder that inhibits my ability to process certain protiens. It also causes mitochondrial dysfunction. It’s symptoms are similar to those of mitochondrial myopathy, chronic fatigue syndrome, fibromyalgia, dysautonomia, gastroparesis, POTS, and many more. My disorder is what is known as an Organic Aciduria. There are many forms of organic acidurias, so I went to the Organic Aciduria Association to try to find some answers. I sent a message to the organization about my condition trying to get some answers, but the response I received in return was disappointing. I was told that my diagnosis, 3-Methylglutaconic Aciduria, is one of the rarest of the acidurias, and they had no information for me. No Information!? How could that be? I was told to reach out to the members to see if anyone had experience dealing with it. I have yet to find anyone.

So what does a Zebra do when it doesn’t look like any of the other Zebras? Where do the rarest of the rare go when they need support? Don’t get me wrong, the other Zebras play nicely. They try to support in ways that they can, they add me to their groups and lists, and chat with me. They do their best, but when it comes down to it I am still the only one in the group who doesn’t quite belong. I don’t have a group I can call mine.

When you have a chronic, debilitating illness you can become isolated from the rest of the world. It’s easy to fall into a depression without proper support. Having a sense of belonging to a bigger community is critical. That’s what so many “spoonies” have found through social media. I have found that although I may have people who are supportive, I have yet to find anyone who truly understands. I am the herdless Zebra, and regardless of how much support you have, without a herd you are still in this alone.

When Medical Setbacks Change the Face of Your Chronic Illness

When Medical Setbacks Change the Face of Your Chronic Illness

The thing about living with chronic illnesses is they are never static. Every day symptoms wax and wane. Some days are better than others, but the symptoms are always present. However, sometimes changes happen when you just know that it is a stage of evolution in your illness that will change how you manage each day for good. How do you handle disease progression, knowing that from this day forward things will likely not be the same again?

For me, it seems like every time I have a significant medical event, flare, or emergency my symptoms progress with more permanency. My most recent hospitalization has left me feeling as if this again is a sign of disease progression from which my strength will not fully rebound. The fatigue, weakness, and pain have increased; and although some days are still better than others, my best days are still worse than ever before. I have lived with this illness for long enough to know that this is another turning point in my life.

How does one cope with the knowledge that you are living with a chronic, progressive illness that will continue to require alterations in how you manage life? How does one move past the pain of losing more and more control over your body? How does one manage the fear of losing more independence and requiring increased help from others? These are things that healthy people can never fully understand.

Illness progression can evoke feelings of loss, anger, hopelessness, and fear. It causes feelings of uncertainty about how you will continue on with your life. What does my future hold? What will my level of functioning be in a year, five years, and ten years down the road? If those of us living with chronic, progressive illnesses focus on our uncertain future we miss out on our life in the present. It can result in depression, isolation, and loss of hope. We must remind ourselves that we have a choice to make. We can give up, or we can choose to accept our limitations and focus on the abilities we still have.

I still get angry at times when I cannot participate in activities I once used to enjoy. I have moments of weakness, fear of what my future holds, and thoughts evoking depression over the pain and losses I’ve endured. We all experience these feelings from time to time when living with chronic illness. It is in these moments when we are most vulnerable, and in need of the most support. I’m happy to say that regardless of my setbacks, I will still persevere. I don’t know what my medical future will look like, but with the support of my family and friends I will continue to live, love, and look to the future with strength to carry on.

 

The Importance of Being Your Own Advocate: You are Your Best Doctor

The Importance of Being Your Own Advocate: You are Your Best Doctor

Knowledge is power, especially when you are living with a chronic illness. I was reminded of the importance of educating myself and my loved ones about my illness and my needs this week when I ended up in the emergency room with unexplained, life threatening symptoms.

When you have a rare illness such as mitochondrial disease, like myself, you can expect to be on the receiving end of dumbfounded looks from doctors and nurses in nearly every medical facility you frequent. The fact of the matter is that you and your loved ones are probably the most knowledgeable people in the room when it comes to your illness and your needs. Doctors just are not familiar with how to manage rare diseases in these situations. This illustrates the importance of understanding fully how your illness affects you, and what your needs are in emergency situations.

Understanding your needs is only half of the equation, however. If you cannot effectively advocate for yourself, or identify a trustworthy companion to advocate on your behalf, then you will never receive the care you require. You must be vigilant in emergency situations or your life literally could be at risk. In my case, I must remind the medical personnel not to give me traditional IV fluid each time the IV bag is replaced because it is toxic to my system. I am required to monitor my own medications due to the constant mistakes in medication management in the hospital setting. I need to ensure they do not use traditional anesthesia protocol on me as it can be fatal due to my illness. A simple trip to the emergency room can turn into a life threatening mistake if I or my spouse are not vigilant in ensuring that the medical team are fully educated about my illness and my needs at all times.

They don’t always want to listen. Many doctors feel as if they know best, and they aren’t here to take orders from the patient. It is imperative though, if you have a life threatening chronic illness that you advocate for yourself regardless of the feelings of the medical staff. If you are not receiving the appropriate care you require then it is best to seek alternate care elsewhere. Take your medical care into your own hands and make sure you know what your needs are. You are your best doctor.

 

Sometimes the Loneliness Hurts Worse than the Pain 

Sometimes the Loneliness Hurts Worse than the Pain 

When you live with a chronic, debilitating illness you likely share common symptoms of pain and fatigue, but you probably also understand the often overlooked symptom of loneliness. The resulting isolation that inevitably accompanies anyone carrying the burden of living with a chronic illness is often the most painful and difficult effect of chronic illness one must face.

I find myself struggling with this symptom the most on this day. New Year’s Eve is one of my favorite holidays. I used to love getting together with family and/or friends and ringing in the new year with fun and fellowship with those I care about. I look forward to watching that glamorous shining ball drop slowly from the tower while we count down to the upcoming year waiting for that first kiss of the year with my wonderful husband. I loved wistfully dreaming with friends about what the future may hold for the following year, hoping that next year will be better than the last. It was the end of a chapter and the beginning of a new adventure, and tonight I find myself closing this chapter alone because of this stupid thing called mitochondrial disease.

Chronic illness doesn’t just take away your physical abilities. It doesn’t just make your mind less sharp. It seeps its way into every fiber of your soul, and every aspect of your life. It makes your friends slowly forget who you are. They lose your number and forget where you live. They forget you can’t always go out but never come over, and therefore you merely disappear from existence. I’m so grateful for my husband who will always be by my side supporting me, but with his job I find myself often alone during the most joyous of occasions. New Year’s Eve, Christmas, July 4th, always alone. Alone with only my pain to keep me company. Sometimes the loneliness hurts worse than the pain, but the pain always causes the loneliness. Maybe next year will be better.

Don’t Let Your Job Define You

Don’t Let Your Job Define You

When You Fear Losing Your Identity When You Have to Stop Working Due to Your Disability

“Nice to meet you. What do you do?” That question is asked so many times in our society that it has caused us to identify ourselves by what we choose to do for employment. But what if you cannot work? How do you identify yourself?

This is a question I have been struggling with for a while now. I have been in the professional world for over 10 years, and I have worked at least part time since I was 15 years old. With a master’s degree, I planned to be a working professional until I retired. However, my disability appears to have other plans for me. Now I must come to terms with the fact that I may not be able to answer the question, “What do you do?” much longer. Who am I? What will I be then? Just another person with a disability? Is that what defines me now?

The disabled world has been a part of my life since birth. Not because of my own disability, but because of family members. I grew up with an uncle and two cousins with spinal muscular atrophy type II. I remember the many years of volunteering at the local MDA Telethon every Labor Day weekend. I visited the MDA camp every summer with my uncle as I got older, and met multiple friends. It is there where I met my future wheelchair basketball coach, who was also a counselor there. At age 16 I became a counselor at the MDA camp; unbeknownst to me, 15 years later I would be given a diagnosis of mitochondrial disease, a form of muscular dystrophy.

I began volunteering for a children’s recreational rehabilitation program teaching adaptive sports to kids with disabilities at age 15, and when I began showing symptoms of my own disability, I too began playing wheelchair basketball. After graduation I went to college for social work. Once I graduated, I began my career as a mental health case manager working with individuals with mental illness. I enjoyed that career for five years before transitioning to therapeutic foster care working with children with disabilities in the foster care system.

I then transitioned to my current position as a probation officer after obtaining my master’s degree in Forensic Psychology. Here, I work with individuals with disabilities on a daily basis. It is astounding how many individuals with disabilities are involved in the criminal justice system. This system is not the right place for many of these individuals, and change must begin with an in depth look at our treatment providers, but that is a different topic altogether. After five years of service with the probation department, I have finally come to the end of my ability to continue. This has been a very difficult decision for me to make.

I must admit, I have always had trouble with the idea of being unable to work. I have helped so many people apply for and obtain Social Security Disability, but I have always thought it was something I would never do for myself. To be honest, part of me almost felt as if I was better than that. I felt as if I had the education and training to overcome whatever obstacle would come my way, and I would never be the person who would say, “I’m on disability.”

Even as a social worker, I have my own biases about people who live their lives on social security. Maybe it’s because I have worked with some people that I have felt were using it as a cop out. I will admit I have thought, “Well if I can work, why can’t you? Surely you can’t be worse off than me.” Maybe it was my age, maybe it was my inexperience, or maybe it was my subconscious fear of my own limitations surrounding work. I have come to realize that I am no more qualified to determine how disabled someone else is than they are to determine how disabled I am. A person’s disabilities are their own struggles that nobody else can fully understand.

I worked until I could work no more, and then I worked some more. I was in denial, and I pushed myself to the point of exhaustion. Sick days became more frequent, productivity became slower, mistakes happened more frequently, and I was reaching my limit. More and more symptoms began arising,  and my symptoms were increasing in frequency and intensity. I had to make a decision, and that decision was I could no longer return to work. The paperwork for long-term disability was started. The application for SSDI began. I had become one of my former clients. What was happening to me? I was losing my sense of self. I was losing my purpose in life. Who was I now? How do I answer the question, “What do you do?”

I’ve come to understand that our society has placed value in the wrong place. We need to focus on the person, not what they do or what they can do. I have bought into the idea that my job defines me for many years. I have pushed through pain and suffering because of the fear of losing my identity if I am not working. I would be a failure. I would be giving in to my disability. I would be nobody. These are all thoughts I had, and sometimes they still pop up every now and then.

It took a lot of soul-searching and support from my husband to finally come to terms with the fact that listening to my body and understanding my limitations is not giving up. I lose no part of myself by not working, because my job does not define me. I am not my job, I am Me. I am a loving wife, I am caring, I am an animal lover, I am adventurous, I am funny, I am family-oriented. I am Me, and nothing can change that. My job and my disability are only parts of my life; they do not define me. Don’t let any single part of your life define you, just be you!