“Mental illness is not real you are just sensitive” “If you pray you will feel better” “You need to be happy with your life” I’m sure as a mental illness warrior you have heard these statements at least once in your life. They can be disheartening and hurtful. I’m here to tell you, you are valid. Mental illness is just as real as a physical Illness. The example I give to people who have a hard time understanding is, if someone has a flu you would expect them to go to the doctor and get treatment. Why would you think someone who suffers from mental illness should be treated differently. I’m here to tell you that you are valid, you are strong, you are enough. Keep fighting. Keep your head up.
1. just because you don’t have a name for it does not mean it isn’t real. You may feel like you are going crazy. You may even think “is this real” but I assure you it is. You are a warrior and keep fighting.
2. You are your biggest advocate. There are going to be times where you want to say something to a doctor or nurse and you don’t. Do it. Say it. You know your body better than anyone.
3. There is support for you. If you are feeling alone know there is others who can understand. Reach out on social media. Join support groups on Facebook, or instagram. There is a community out there for you.
4. Do not settle for less. If you feel like you don’t deserve basic human wants and needs then you need to change your mindset. Do not settle for anything, jobs, friends, or family. If someone does not support you or your needs you need to find someone who does.
5. Do not be afraid to post or talk about your struggles. You may feel ashamed but don’t. You sharing your story can help build your support group. You could also help someone else be inspired to get the help they need and deserve.
1. Never tell them a cure you think you know. I can guarantee that they would know if there was a cure available to take away there pain. Even if it comes from a good place, do not tell someone ways to deal with there illness.
2. Do not make them feel that they are a burden. Physical illness can also lead to mental illness and making someone feel like a burden will not help there self esteem.
3. “I heard yoga can cure you! Also there is this diet that might help, also here is a book about natural foods that will help” this goes back to number one. Please do not give advice about managing a illness unless you are a medical professional, or have suffered from the same illness and want to share things that worked for you.
4. Do not say “but you were sick yesterday” chronic illness is for life. If it was easy to wake up feeling better they would.
5. “You are just lazy” imagine you are sick with the flue and on top of that you also have to carry around a bag that weighs 10 pounds in the heat, that would make you a little bit slower or not able to complete all the task you would like. Chronic illness warriors aren’t lazy, they are more likely to damage them self’s trying to accomplish something.
Every time I think about things I want to accomplish I get a jolt of anxiety. Before I became sick I used to get a jolt of excitement. There is so many things I want to do in this life and I get afraid I won’t be able too. I want to make a YouTube channel, I want to foster kids, I want to write a book, I want to travel the world. There are so many dreams I have that the list goes on and on. Every time I have a free moment I find it hard to rest. When I’m laying in bed I get filled with dread. I could be doing something more productive, but I’m to tired or ill to get up. When I’m trying to sleep to heal I feel a pit in my stomach calling me to take action. This has caused me to injure myself and push myself to far and end up hospitalized. One thing that was hard for me to learn was limitations. I would always compare myself to others my age. I would try to keep up and do all the things to seem normal and then I would be so sick I’m in the hospital for a week. I worked a full time shift and a full time student. My job was not a easy one either, a manger at the busier fast food chain. Chickfila. I was scheduled 10-12 hour shifts daily and if I called out sick or said I needed rest I would be criticized and told that others would suffer without me. I remember I was so sick I called out of work and they harassed me until I came in for 2 hours to close money because someone had a date to go on. I left that shift barely being able to walk and my boyfriend had to get me and take me to the hospital where I was admitted for 9 days. I never got a apology or even acknowledged that I should not of came in that night. There is a lot to that job that I don’t really want to get into in this post but I will another time. I had to drop out of college two semesters in a row from being too ill to attend. I could not find a balance of rest and work. After my last 9 day stay I knew something needed to change. My one supervisor convinced me that it would be wise to drop out and focus on work. I listened. A few weeks after I cried in my car and broke down. I was tired mentally, and physically. I could not handle the stress and my body was slowly breaking down. I cried out to God “I’m here send me, open doors please I will follow” and he did. I switched jobs and my health has been way better. I still get overwhelmed with the anxiety of not being able to do all the things I want. I have worked on resting when I can and life is not all about what I accomplish here. It’s more than that.
One thing that is really hard is feeling confident with myself. There are things I should do that will help my Heath and keep me from feeling sick and pain, but I don’t do it because I’m embarrassed or don’t want to draw attention to myself. I should be drinking/eating every 30 mins. I should be checking my sugar every hour at least. I should be taking my medicine at scheduled times. I should be laying down when I’m dizzy. I should be doing my shots weekly and going to my appointments. I don’t know why I struggle with this around new people. I don’t care around my friends and family, heck they yell at me if I don’t. It’s something I need to work on.
I think the worst part is waiting. I’m so terrified that I will go into the doctors and they will tell me they can’t help me. I’ve had so many nightmares about it. It’s happened to me so many times before but this time is so much scarier. I’m talking about my life here, cancer, tumors, chemo. It’s all so scary and all I can do is wait around and hope I get answers soon. I threw 3 coins into this fountain after we left that appointment. I wished 3 times for me to not have cancer. I also recognized the fact that I might and that I would be ok no matter what journey lay ahead. I know I can handle anything thrown at me because I have God to help me. I still am so tired and can’t imagine what lays ahead. Testing, more testing, testing and treatments and needles and medicines and hospitals. It’s exhausting thinking about it. I’m trying my hardest to stay level headed but I’m so tired of being sick and tired. One way I’m coping is by morbid jokes. I know this might not be healthy but it helps. The people around me hate it though. I can’t explain how it helps, but it does. All we can do in life is either cry or laugh about things, good or bad. I rather laugh. Please continue to pray for me on my journey. #cancer #spoonie #chronicillness #pain #tired #hope #ehlerdanlos #cancersupport #cancersupportgroup #ehlersdanlossyndrome #spoonie #spoonies #likeforlikes
This is only a quarter of the medicines I have been prescribed in my life. There are medicines I take daily that if I didn’t take I would not be able to move. My body does not know how to work on it’s own and that’s ok. God created aides for us to help and support us in life. I have heard many things about medicines. “You take too many” “the side effects” “addicted” all of these statements are true to an extend. Let’s start with “you take too many”; medicines are expensive and if I didn’t have to spend money on them trust me I would not. I take pills that dissolve as soon as they hit water and taste disgusting. I take medicine that if I don’t eat with it I will vomit. I have to set multiple reminders a day to remember to take them. It’s not fun. If I didn’t need them I would not take them. Next, “side effects”; trust me I understand side effects more than you do probably. I have taken medicines that have caused me to have migraines so bad I can’t move. I’ve taken medicines that cause my stomach to cramp. I’ve taken medicines that cause my hands to shake. I’ve taken medicines that have caused my whole body to go into convulsions. I’ve taken steroids that caused me to sleep for days on end and my heart rate to go down. I’ve taken medicines that have caused my blood sugar to get into the 60s. I know about side effects. I can’t try medicines that change my quality of life without risking side effects. Let’s say you go to a restaurant and you want to try the cheesecake but you aren’t sure if your stomach is going to be able to handle the dairy. You decide to eat it anyway and it taste amazing. You spend the rest of the night on the toilet in pain. You now know next time to not order that. It’s the same concept but I’m not lucky enough to have a choice. Last topic “addiction” this is something I could talk about for paragraphs and perhaps I will one day. I am very aware of addiction and the role it plays in life. I have seen it take ahold of many of my family members and it’s a great fear of mine. This reason alone is why I refuse to take any narcotics. Now, my body dislocates joints multiple times a day.this picture is minutes before my first failed spinal tap. any normal person would be at the hospital getting pain meds and screaming in pain. My pain tolerance is super high from years of being in pain. If I say I’m hurting you better believe that I’m in 11/10 pain. My choice in not choosing narcotics does not reflect others journeys with chronic pain. It is up to the person and there lifestyle. Many people can not suffer from a addictive personality. I personally do and I don’t want to risk it. I want to make this very clear; just because I choose to not take those medicines does not mean I’m “stronger” or take away from the other persons pain. It is a choice that everyone needs to make based on there own bodies and believes. To make a long story shorter, everyone needs to keep there opinions on medicines for others to themselves. Saying “try this” or “all natural” does not change anything for us. Everyone needs to go on there own life journey and deserves respect and support from there loved ones. #meds #pain #spoonie #ehlersdanlossyndrome #chronicillness #chronicpain #migraine #blog
I’ve struggled for a long time with pain and sickness. Since I was a child I was constantly sick. One of my first memories is being sick. I have struggled with insecurities and depression following my diagnosis’s. Society has made me feel that I should hide what ails me. “Suck it buttercup” comes to my mind. I have heard many statements like this my whole life. I was conditioned from a very young age from doctors, peers and authority figures in my life that I should always be strong, never fail and show no weakness. I’ve hid behind so many things and put on this fake being to the world around me. Recently I have discovered that it’s mentally and physically draining to do this. Hiding and faking takes a lot of work that my body can’t spare. I’ve come to the realization that there is so many teens, children and adults who suffer in silence as I do. Why do we have to hide? Why is it shameful to be on medicine? Why is it considered lazy if you need a day or rest. Why are you a bad friend if you can’t do the things people around you can? I am but one person and I do realize I can not change the world, that being said even if I change one person perspective that is enough for me. I’m done hiding. I’m done running. I’m going to be showing the real and raw truth that people with chronic pain and disabilities face every day. The negative and positive, and trust me there is a lot of positive mixed in as well. I am a very big believer in Christ and my faith has helped me come a long way and has helped me come to this realization. I encourage you to read and share if you want my posts and have a open mind. Help me change the world. #chronicillness #pain #spoonie #blog #health #society #ehlersdanlossyndrome
I was always a sick child. The first time I remember being in pain I was 6 years old and my calf’s and shins hurt so bad. I could feel the stabbing pains that only helped if I rubbed them. That was just the beginning. My pain would only escalate the older I got. By the time I was 10 I had already accepted the fact that I was not a normal girl. I realized very quickly that other children my age weren’t always falling. They didn’t have trouble running on the playground and I realized it was easier for me to sit out of tag than run around. When I was a senior in high school I began to get sick enough to be hospitalized. The first time I was hospitalized was for throwing up blood. I was there for 3 days. A few weeks later the same thing happened and I was in the hospital with painful ulcers for 5 days. In-between those times I had been to the ER over a dozen times for other reasons. The October of my senior year of high school I was in the hospital for 10 days for stomach issues. I lost 11 pounds in a week and could not hold any food down. I was accused of doing drugs, overdosing, and being depressed. Every single doctor saw a young girl very sick and there mind automatically went to “she is a teenager doing this to herself” it was so hard. Being a senior in high school is hard in itself. Where do I want to go to college? What’s my plan for my life? What’s next? And on top of that I didn’t even know if I had a future. At times I really thought I was going to die, or I felt that it would be better for me to die so I was not in so much pain. I was battling not only a unknown illness but also a dozen doctors not believing me and belittling me. If I didn’t have such a incredible mother who fought for me every step of the way I would have given up. In January I was at lunch and felt sick so I put my head on the table. I passed out and my friends discovered me lifeless. I went to the ER yet again, already prepared to be humiliated. This time was different though. There was a doctor there who said “I think I know what you have. I want you to see this cardiologist named doctor bahlal” I wish I could go back in time and get that ER doctors name. He was the one who set everything into motion. I got into the cardiologist in the next few days. I walked into that appointment not expecting anything. I didn’t want my hopes to be crushed once again. The second the doctor walked in I knew my life was about to change. He shook my hand and said “are you always that cold and pale” offended I responded “yes the sun is my enemy” He then asked me “do you have scoliosis?” Now I am fully dressed in a maxi skirt and there was no way he could of known I had scoliosis by looking at me. “Do you have flat feet?” I was in tennis shoes. “Yes extremely flat feet” He then states “I know what you have.” Me and my mom just started at him in shock. He then finally examined me. He then said “like I thought you display all the signs of Ehler Danlos Syndrome” me and my mom just looked at each other. I still don’t know what my mother thought at this moment. After years of fighting for her daughter this man comes in and throws a bunch of scary words at us. ” what is that?” I asked. I was not afraid. I don’t think I felt anything. I have had doctors tell me they thought they knew what I had so I was not getting my hopes up. “It’s a rare disease that effects the collagen. It’s a genetic disorder you were born with it. I want you to see this geneticist to get a proper diagnosis. I also believe you might have POTS. I will run that test though.” I don’t remember exactly what I thought. I didn’t let myself feel anything that day. A few days later we got to do a tilt table test. Which in itself was a horrible test I don’t wish on anyone. It confirmed his suspicions and I did indeed have POTS which stands for postural, orthostatic, Tachycardic, syndrome. He also discovered I had vasovagal syncope. I went to the geneticists and she did the Brighton test and confirmed I did have ehler danlos syndrom, hyper mobility type 3. I was so relieved to have answers. There is no cure for EDS and there is only managing symptoms. This was just the beginning of my journey fighting the rare.
Thanks for joining me!
Good company in a journey makes the way seem shorter. — Izaak Walton