Katlyn Simon

@kaasimon07 | contributor
Katlyn was recently diagnosed with a primary immunodeficiency. She is learning to accept her limitations in everyday life while striving to achieve her dreams. She can usually be found reading a great book, watching Netflix with her boyfriend Luke, or playing with their pup Lady.
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Katlyn Simon

Not Being Positive About My Occipital Neuralgia

Once again I am dealing with a letdown. This seems to be a very common occurrence in my life with chronic illness. I feel like every time I take one step forward something else decides to throw me two steps backwards. I fight my body every single day. It is never-ending. I got notice today that my insurance company once again denied a procedure. This procedure is supposed to finally relieve some of the pain I deal with on a daily basis because of my occipital neuralgia. I deal with pain from three separate chronic illnesses. My goal with this procedure is to alleviate 1/10 of the pain I go through. It is heart-wrenching to know that someone sitting at the insurance company is able to have so much power over my pain. I would never wish my pain on anyone but it is hard to sit back and suffer. It would be one thing if I received this news at home from the comfort of my bed during a “normal” pain day. However, that is not how this life works. I feel like I am one of those people who gets kicked when they are down.  I was in the middle of a stressful day at work and in the middle of a flare from my autoinflammatory condition which leaves me in excruciating pain. I was having a reaction to one of my new medications. It just wasn’t a great day to drop this news on me. Oh, to top it off, the clinic informed me that I was in charge of going through the appeal process on my own. I had arranged for a ride and a day off of work. Everything was finally put into place. This procedure was scheduled months ago and I received the news that it was cancelled six days before I am going in. Six days? Really, insurance company? While dealing with everything that was going on I broke down. This is one of those moments where I just felt completely defeated; my pain wasn’t ever going to get better. This is how my life is going to be from now on. I must have done something terrible to deserve all of this pain every single day of my life. I let these awful negative thoughts creep into my head and take over. I was reminded today mid-cry that I was being negative and my attitude lately has been very negative. This is not how who I used to be. I used to be a happy, productive, creative, spunky, 26-year-old woman. Now I feel lucky if I am able to get out of bed, make it through work, take the dog out, cook, and eat dinner. There is no time for anything else. Hobbies? Dates with my boyfriend? Walking the dog? These are all things of the past. My goal right now is to survive the war my body is raging on me. This takes all of my energy. There is none left over for positivity. Hell, there is none left over for anything besides crawling into bed and hoping my body will allow me to sleep. I am still mourning the life I used to have. I feel like I was robbed of everything good in my life by my chronic illness, but that isn’t true. I have many things to be thankful for. I have a great boyfriend, a supportive family, a wonderful puppy, amazing friends, a flexible job, and a hardworking medical team. I am allowing myself today. Today, I get to be negative. I can crawl into bed and cry my eyes out while holding my dog. I can watch sappy movies and order take-out. I can eat ice cream. I can mourn the life I dreamed for myself and my family. I am allowed to feel this way. This is my life. My feelings and emotions matter. It is important to deal with feelings as they come up. Bottling up all the negativity is not wise. It will eventually come out. I realized today that being negative takes just as much, if not more, energy thanbeing positive. Tomorrow is a new day. Maybe the pain will be better, maybe it will be worse. I cannot predict what is going to happen. I can, however, change my outlook and attitude. Tomorrow will be better because I will try and be more positive. I know I can’t always be positive because that wouldn’t be real, but I can take a step back and look at what I do have. I can try and make a change. We want to hear your story. Become a Mighty contributor here .

Katlyn Simon

Why Saying 'I Should' Isn't Helpful With Chronic Illness

I am my own worst enemy. I am stuck in the “I should” mindset. This kind of thinking always sets me up to fail. I barely remember what it was like before I was considered chronically ill. I was always a sickly kid and turned into an adult with multiple chronic illnesses. On a bad day, I catch myself thinking “I should be able to get all the laundry done, do the dishes, make dinner, and do XYZ.” However, that isn’t always possible. After I have put all of my energy into getting through the work day, I get home utterly exhausted. When those “I should” thoughts run through my brain, I need to immediately shut them down and turn them into “Today is a bad day, but it won’t always be like this.” I need to remind myself that I should be kind. I am going through a lot right now. I have a primary immunodeficiency, I have occipitalneuralgia, and I have a yet to be diagnosed disease. I go into anaphylaxis and get hives for no apparent reason. Right now life is hard. It is acceptable to take a day off to take a mental health day. The dishes and laundry will still be there tomorrow and maybe tomorrow will be a better day. I need to work on not being so hard on myself. I am positive that I put more pressure on myself than anyone else in my support system. I don’t want to let anyone down, but I am pretty sure I am the only one who thinks that I have let people down. I am not the person I was before I got sick, and I need to stop comparing myself to that girl. She no longer exists. I need to learn to accept my new normal, whatever that might be. I was reminded by someone in my support system that I need to stop “should-ing” myself. I set myself up for failure when I think I should be able to do something I used to do. I need to take things one day at a time, and sometimes all I can handle is one moment at a time. Living with multiple chronic illnesses is exhausting and sometimes it takes all my energy to just be. On those days I need to accept that is all I can do.

Katlyn Simon

Feelings of Isolation With Primary Immunodeficiency

Having a chronic condition like primary immunodeficiency (PI) and another condition that is yet to be diagnosed can be very isolating. There are online support groups and local events to meet others, at but no one can know exactly how I feel. Every case of PI is very different. That is why they call us zebras. It is easy to get lost in the feeling of isolation and despair knowing that no one will ever be able to experience exactly what I go through on a daily basis. I can tell them how I am feeling, but words can only explain so much. I like to use art to try and explain how I am feeling, but once again that cannot convey everything I go through. Honestly, I don’t expect anyone to understand, but hope my support system will treat me with compassion. It is very frustrating when I tell someone how I am feeling and they respond with, “I know how that feels.” No, you don’t, and I don’t expect you to. This is almost as bad as the “I’m sorry” response. I don’t expect people to apologize for what I am going through. When I explain what is going on in my chronic illness world, it is because I want you know. I do not expect pity for my experiences. I have a pretty high threshold for pain. I push myself to get through the day while in pain and usually with an added infection thrown in. If I don’t show up at work it is because I am very sick, because if I called in when I didn’t feel well I would never work. I will stay in the working world for as long as physically possible because it ties me to sense of normal. Chronic illness effects every aspect of my life whether I want it to or not. It has become a part of who I am, even though I wish it wasn’t. The world isn’t made of only rainbows and butterflies, but of loneliness and fear. Having a chronic illness is like having a rain cloud follow you everywhere you go. You never know when it is going to rain or start storming. I find that when I have these feelings of isolation, I need to recognize that how I feel is acceptable. I am allowed to feel this way. They are my feelings and no one can take them away. I allow myself to feel this way for a set period of time and then I try to move on. It is much easier said than done! Then I look for support through the online support groups I am in and through my family and friends. Eventually that rain cloud will break open and allow some sunshine through.

Katlyn Simon

Advice for Undiagnosed Patients

We have all been there. Every single person with a chronic and/or rare illness was undiagnosed at one point. Don’t let the normal test results, which means no diagnosis, get you down. Your medical team will figure out what is wrong with you. It takes time and patience, which I know are the last things you want to hear right now. It will get better. Maybe not in the way you hope, but it will get better. A diagnosis is just around the corner. It is important not to give up. Keep fighting for the answers you deserve. Without a name, the condition or disease that plagues your body cannot bemanaged, and symptoms are only treated as they arise. Yes, it is extremelyfrustrating. Painful even. I have been there. We have all been there. The constant battle within yourself trying to determine if you are making these symptoms up or if they are actually real. The thoughts about how it can’t actually be as bad as it is because there isn’t a diagnosis, or even an answer as to why these things are happening. It will get better. Don’t allow yourself to become trapped in your own mind. Don’t allow thisunknown illness to take your sanity and hope away. Get the feelings of anxiety and even depression out. Do something to deal with the feelings and don’t let them drag you down. Counseling can help. Art therapy can help. Talking with others who are undiagnosed can help. Hell, talking with others who don’t have a chronic illness can help. You must deal with these feelings as they arise, or you will likely develop anxiety. This will be more difficult to handle, on top of all of the other symptoms of your undiagnosed disease. You know your own body! Don’t let a doctor or friend tell you that it is all in your head. Find a doctor and a support system who will listen and believe in you. Keep fighting for answers. Eventually a test will come up positive and you will have your answer. It is hard to keep living in the undiagnosed stage, but you have to keep moving forward in life. Yes, it is a struggle but the struggle is worth it in the end. Do what you can, and don’t give up hope.

Katlyn Simon

Taking a Day Off From My Chronic Illness

It can be easy to get lost inside your chronic illness. I think it can become a part of who you are whether you want it to or not. But chronic illness does not have to define you. It’s important to get up and do something for yourself. Go beyond the normal self-care and dress up. Include makeup if it makes you feel better about your appearance. Then show up to an activity you wanted to go to but thought about skipping because of your chronic illness. You’re allowed to have a day off from being chronically ill. Enjoy your time out of your secluded house. You are not your illness. I decided to get up, dress, up, show up and never give up this weekend. My boyfriend, Luke, and I went to a demolition derby. I felt beautiful again for the first time in months despite the prednisone weight gain, moon face and chronic swelling in my hands and feet. I was able to be the old me for one day. Was it difficult? Of course it was. Just because I decided to partake in an activity doesn’t mean all of my pain went away. A chronic illness cannot be wished away, but it can be managed. With the right medication and the perfect company, I was able to enjoy my time out of the house and watch some trucks get destroyed! The demo derby was a great success. I had so much fun. This experience has prompted me to make a lofty goal for myself. I want to get up, dress up and show up to one extra event a week. One fun event with friends or family or even by myself.  Will that always happen? Maybe not but it’s a goal that I feel could be attainable. While facing a chronic illness, it’s important to remember you’re not losing your identity do the illness. You might have to make some changes to your life. Maybe everything you used to do isn’t possible anymore, and that is OK. It’s important to keep trying to have a normal life, whatever your definition of normal is. My normal is date night with Luke. This week was the demo derby. Next week we’re going out with friends on Friday night. Who knows what the weekend beyond that will bring! I am excited to keep pushing forward and find out.

Katlyn Simon

A Letter to the Urgent Care Doctor Who Rolled His Eyes at Me

To the healthcare professionals at urgent care, Trust me, I would much rather call and be seen by my primary care provider, or even one of the many specialists I see on a regular basis. You were not my first choice, nor my second choice. I dragged myself out of bed to visit this urgent care clinic because I could not be seen anywhere else and this was urgent. I don’t appreciate the eye roll when I try and tell you about my primary immunodeficiency (PI) and recent infection which led me to this germ-infested waiting room. A part of my immune system does not function properly and I get infections very easily. I do not enjoy going to the clinic unplanned. Most physicians do not understand how to treat patients with compassion when dealing with a rare, chronic illness. A person with a functioning immune system might be able to clear a sinus infection in a few days or a week, but I am unable to do so. I am the one percent of the population living with a primary immunodeficiency, and when I get a sinus infection, I am down for the count for days. This often leads to bronchitis, which requires multiple inhalers to manage. I don’t appreciate the need to excuse yourself from the room to Google my condition because you have no idea what my diagnosis means — only to wait for you to reappear and be an “expert” after your five-minute lesson from the Internet. I was discharged with the instructions of: “follow up with your primary care physician if you continue to feel unwell.” Unwell? Excuse you? I have a sinus infection and you won’t even look in my nose, eyes, ears and mouth because my “fever” isn’t high enough yet? I have a naturally low body temperature and when it hits 99 degrees Fahrenheit, something is wrong! Luckily, I was able to follow up with my primary care provider the following morning and was prescribed the antibiotics I needed to start fighting the infection. All I ask for is compassion, or even to be treated like a human being while I am in your clinic. I would like for you to at least appear to be listening to what brought me in. I would like you to consider the solution I am presenting you. I know my chronic condition, but more than that, I know my own body. Something is wrong or I wouldn’t be here. Please take the time to see me as a person who is obviously ill and needing care. Didn’t you take an oath? *** Now I realize when going to urgent care or the ER, it is very important to be your own advocate. You need to stand up for the care you need. I also firmly believe you need to know when your battle is lost and the healthcare team isn’t going to do what you need. I see no point in countless hours spent arguing, only to be sent home without the necessary treatment. It may mean leaving the clinic and following up with your own physician, which is highly frustrating. If you do need to be seen elsewhere, make sure to have a care plan in place. Have your doctor make a note in your chart about what to do when you present with a certain set of symptoms. It is easier to get the care you need when your own doctor has already written an order or made a note of what to do. Sometimes doctors just want to hear it from another doctor and not just the patient. I know what my body needs; after all, I am the one living with a chronic illness. I have been down this road many times before! My diagnosis is at the top of my chart, yet some doctors decide it isn’t relevant or they simply don’t care. All I ask for is some compassion. Is that really too much?