The Herdless Zebra: When you are 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

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

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. 

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!

Support Networks

I consider myself to be fairly independent, but I will admit that I rely on my husband a lot. He is the best person in my life, and I owe a lot to him. He gives me strength when I feel like I cannot go any further. He helps me to take care of the house and other tasks that I cannot always handle. He has patience when I am not feeling well. He is strong, steady, and reliable. I know that no matter what he will always be there. Without him, my life would be much harder, and I would be without my best friend.

I think many people with disabilities have a special someone who they rely on for strength, encouragement, and help. What we don’t always think about is what we will do if that person is no longer able to help care for us. What happens if they become ill, disabled, or even pass away? We don’t like to think about it, but it is something we all need to consider. What will I do if he is suddenly unable to do what he does for me now?
Currently, my husband is recovering from surgery. Luckily, it is a simple surgery that will not cause any major issues, but it got me thinking, what will I do if he is unable to be here one day? You see, my husband has a dangerous job which requires him to put himself in harm’s way on a daily basis. When he leaves for work I never know if he will come home at the end of his shift. We aren’t in denial about this possibility, and we have talked about it often. We are both mentally prepared to make that sacrifice if necessary, but am I physically prepared? This situation has gotten me thinking. Will I be ready?

We all need a support system. We need a network of people, a community of individuals who can support us when needed. If you don’t have that support system then reach out. There are multiple agencies and networks out there to help individuals in need. If you are religious, seek support from your church community or your spiritual advisors. Make new friends through a community club or activity that interests you. It is never too late to make new friends, and these friends can be a significant source of support in times of need in the future. I have learned that once I was able to let my guard down a little it was easier to make true relationships that create a stronger bond. There is a certain type of family that comes with my husband’s job, and normally I would be the type of person that would not embrace that. I would typically shy away from others involved in that “family” because I would feel different or unacceptable. Since I have learned to let my guard down I have learned that there are people out there that are sincere, and I have formed some very strong bonds that will last a lifetime. I am confident that if, God forbid, one day my husband does not come home, that there are people in my life that I can rely on. Hopefully, you can gain that comfort and support as well.

The Hurt That’s Caused When People Doubt Your Disability

Before my disability became so bad that I needed to use crutches or a wheelchair, people never understood. Even now people still don’t understand. On a daily basis people see me use a wheelchair and then stand up and walk. They say, “Oh, so it’s not permanent?” Yes, it is permanent. My disability is not going away, and it is actually getting worse. What you mean to say is I am not paralyzed. I don’t understand why, but it is a common misconception that everyone who uses a wheelchair is bound to that chair 24/7.
— Not everyone who uses a wheelchair is paralyzed.—
— Not everyone who has a disability uses a wheelchair.—

When I was in my teens and just beginning my journey in this disabled life, so many times I would be called a “Faker” by the able-bodied and disabled community alike. I felt like I was in limbo. I didn’t belong anywhere, and nobody could tell me what was going on. Was I crazy? I didn’t think so, but when you are told something so often by so many people you begin to think it is true.

It made it very difficult to trust people. I didn’t know whether to tell them or not. Do I disclose or hide it? If I hide it and then have a bad day it all comes out in the open really fast. Then I am left with the question of whether or not they will stay. Will they believe me? Will they call me a freak and never want to talk to me again? What should I do? These questions I dealt with on a daily basis for so long. I only let a very small number of people into my life. I put up walls so tall and so strong it took many years of hammering by my husband and my closest friends to break it down. I didn’t even let my family in my circle at first. I didn’t tell them about all of my struggles, my symptoms, or my flairs for fear of rejection. I feared they wouldn’t believe me. I was a teenager, and everyone told me I was young and healthy looking and I shouldn’t be feeling that way. But I was. And that continued into adulthood. Only just recently have I begun to learn what is going on in my body, and finally I have been able to gain some peace. I’m not crazy, and the things I was experiencing all those years were real. Only just recently have I begun to let others into my circle. My family and friends are just now learning all there is to know about me. All of those years of anger, self-doubt, shame, fear, sadness, and loneliness take a toll. I have to learn to trust again. As a society we need to stop putting people through this pain.

The truth is, the things you can’t see in someone are real, and people need to make sure to be careful about how they approach someone struggling with an invisible disability. Whether it is a physical disability such as MS, Fibromyalgia, Diabetes, etc, or a mental illness or intellectual disability, it is a tough road to go down because to the rest of the world you look “Normal”. I still do. (I think). If you took one look at me, not knowing me and my daily struggles, you too would probably think I am faking. But it is real, and those negative words saying we are “faking” or “crazy” or “it’s all in our head” can hurt people so terribly. It can cause damage that is sometimes irreparable. We need to help break down walls and get people talking. Don’t add bricks to the already solid foundations being laid by the media, society, and even some doctors. Those bricks just make the walls we build around ourselves stronger, and we then become like our disability. We become Invisible.