Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora

When you have a chronic illness like Lupus there are going to be some thing’s that you hold true. Things that you don’t share with most people, things that you know most people don’t want to know, or simply wouldn’t understand. Things that you feel people who aren’t sick would never understand. So as we have come to an end of the 2018 Lupus Awareness Month, I want to share some confessions from the chronically ill. Remember they might not be true for all chronically ill. This is based of the experiences/issues we have and deal with.

1. I often feel guilty — Some of you are probably wondering why we would feel guilty. Well, there are a MILLION different reasons. We may feel guilty that we can’t contribute to our families like we want to. Or we might feel guilty because we feel like we are a burden to our family and friends. Or because of the constants needs or help for basic daily life we need to ask of others. There are a million reasons why we might feel guilty.

2. I feel like I’m alone — Again you may be wondering how we could feel alone when we have friends and family all around us. Well, that’s simple, we may have people around us but they don’t know the struggles we face everyday. So it’s not so much that we may feel alone physically, it’s more mentally and emotionally. Because most family and friends don’t know what it’s like to live our lives, and they can never truly understand our world.  We try and protect them from what we go through, because as much as what we deal with, we also know that they feel a stress.  This can intensify a lonliness.  It creates a vicious cycle.

3. I often experience some level of anxiety and depression — There are so many reasons we may feel this way. We could be anxious because we aren’t feeling well and there’s nothing we can do about. Or because there is something coming up that we aren’t sure we have the energy or stamina for. On the other hand we could be depressed because we had to cancel ANOTHER date with a friend or our spouse. We might also be down because we feel terrible and have for awhile. That takes a toll on your mental health.  The very nature of having a chronic illness creates a constant mental battle that is medically known to alter brain chemistry.

4. I am almost always in pain — Even though you know I have pain medicine and have taken it. I am generally always hurting somewhere. NO, it’s not searing, burning level 10 pain. It’s more like a constant nagging annoying pain. Like a level 3 Pain. But it’s usually constant. And chances are I won’t say a word, and will often say “I’m fine” when asked.  Just remember, your fine and my fine are not the same.  Sometime ask, “No, how are you really doing today?  I want to know.  What can I do that would help you?”  When in pain and tired, these words are a balm physically and mentally.

5. Every good day is truly a gift —Sadly, we don’t always have a LOT of GOOD days. So when I do I may need help remembering that this day is a gift and I should take full advantage of it.  Do not make me feel guilty for having a good day, do not take my joy for this good day.  I may have to pay for this good day for a week to come or a few days in bed or on the couch with pain, fatigue, or any combo of problems including infections.

6. I don’t look sick — Nine Times out of ten you wouldn’t know by looking at us that we are sick. That our bodies are constantly at war with itself. We just look like average people on the outside, but inside we may be a disaster. Going out in public knowing that others can’t see our illness can lead to feeling alone, or being anxious.

7. I am often afraid to work, make plans or have a life — I know this one sounds silly. Why would anyone be afraid of those things? It’s simply because we never know what our body is going to do. I may feel fine at 8am, but at 11am I may feel like I was hit by a bus. Our bodies change so quickly and often without reason. So we never know if we make a dinner plan for next Wednesday how we will feel.  Every plan is made with the caveat of, “If I feel okay,” and buying tickets for an event is a terrifying exercise in wasting money and letting friends down.

8. Not all doctors understand — Sadly, this is the case a lot of the time. I don’t know how many times I’ve seen a doctor who’s not my own and they know nothing about Lupus or how it impacts a person’s life, body & health.  The American Medical Association even acknowledges that auto-immune diseases are one of the most under taught areas in medical school because of their complexity.  More times then not, as the patient you are educating the provider when you are already ill.  At best, they believe you and do some additional research quickly to understand.  At the worst, they do not listen and make medical decisions that do not help you are your condition because they do not understand fully how Lupus impacts you.  Remember, Lupus effects each patient differently.This is just a few confessions of the chronically ill. I could probably write a book on things we feel but never share. We don’t want pity so we often keep our issues to ourselves. We don’t want to be judged or looked down upon because of our health.  What we do want is for people to understand.  Just this week, Toni Braxton tweeted a picture of herself, and people were quick to make a judgement that she had plastic surgery.  No, she is on steroids for her Lupus.  Know Lupus.  Know that we deal with our body attacking us on a daily basis, and that no two cases are the same.  Know that we keep our secrets to protect you, but know those come at a cost.  So today…. We let a few cats out of the bag.

With Love,

Amber & Amy

The Things I Wish Someone Would Have Told Me

Even though I’ve been diagnosed with Lupus, Fibromyalgia, and Endometriosis there are still things I come across that I wish someone would have told me about. You all know what I’m talking about, those little “tricks of the trade” that people who have been dealing with that condition for awhile and no one shares with the newbie. So after having a discussion with several people across several different groups, I have complied a list of things by asking others who have autoimmune illnesses. The list we complied could apply to anyone, not just me, but could change the way you do or look at things!!

-I wish someone would have been honest with me and told me that it may take MONTHS or YEARS to accept the changes brought forth by the illness. If you can ever truly accept the changes.

-I wish someone would have made it more clear that this is not something you can adjust to overnight! It may take a lifetime to fully adjust to the changes in your body, your energy level and your fatigue.

-I wish someone would have mentioned the depression that happens as you start to really accept the changes in your life is real. As well as made it clear that is is okay for you to feel that way! And suggested early on that seeing a counselor might be a good idea. 

-I wish someone would have prepared me for the fact that there is a very good chance that you won’t make a LOT of the plans you schedule, due to your health. Even if it was something you planned and were looking forward to. You just may not make it!! And in most cases your friends will never understand why you can’t just get up and go.

-I wish someone would have prepared me for the fact that not all Rheumatologist’s (or other drs for that matter) know much about Lupus or the way to treat it. And most even if they are familiar may not know the newest meds or what’s really best for each individual patient.

-I wish someone would have reminded me that no one will understand what is happening to me, and no one will stand up for me like I will. I MUST ADVOCATE FOR MYSELF AT ALL TIMES!!! (As do each of you reading this!)

-I wish someone would have told me that anytime I go to the dr or the ER with a pain related issue that I am most likely going to be treated like a DRUG SEEKER!  Whether I am or not. The drs don’t care. They just go off what they see before even talking to the patient!!!

-It would have been great to know that many of my friends and some of my family would turn their back on me and simply walk away! Because they don’t understand the changes in my life or just simply can’t handle it.

-I wish someone would have prepared me for the pain I would feel, not only from Lupus & Fibromyalgia, but also from Interstitial Cystitis and Endometriosis!

-I wish I had been prepared for the fatigue that Lupus brings on. It’s not like any fatigue I have felt before. It can honestly be totally disabling.

-I wish someone would have prepared me for the cost (even after insurance) that I will have to deal with and pay out of pocket.

  -I wish people understood that exercising and eating better will NOT cure my conditions.

  -I wish someone would have prepared me for how hard it is to keep a full time job doing the things you like once you are diagnosed with a life changing disease!

-I wish someone would have prepared me for all the dumb questions I get based on my conditions. I know people mean well, but their delivery could definitely be worked on.

– I wish someone would have prepared me for all the conditions that would come along after lupus. I had no idea that once Lupus came into my life that he would then invite all of his unwanted friend.

This is just a list of things that was combined from a poll Results from a questionnaire in an autoimmune support group, along with my own thoughts. I know many of you feel this way and could contribute many more points to the list. I hope you enjoyed reading this and it made you think about all the things that you have to deal with. Please feel free to share this with friends, family or others who suffer with chronic illness. And always remember YOU ARE NEVER ALONE IN YOUR JOURNEY!! There are always many of us out there willing to help and talk you through any struggle!!

With Love,

Amber

How I Really Feel…….About Chronic Illness & Friendship

So you’ve made plans and were genuinely excited to do whatever it was you planned. But the day comes and you feel like CRAP. You are hurting and battling whatever ailment is most current. And you know there is no way you can make it to said plans. But how do you get out of it without the other person hating you or dealing with the other person judging you? This is a constant battle I think all spoonies fight. Do we follow through with said plans and then spend a week in bed or do we cancel and then deal with the feelings that come from that?!? It’s hard. And it seems like you (or at least I always feel like I am) are always letting someone down. So how do you deal with the situation?

Over the years this is something I’ve gone back and forth with. Do I make up an excuse as to why I can’t go so it doesn’t seem like I’m sick AGAIN?!? Or am I honest, and tell the person how poorly I am feeling and why I really can’t come?!? I’ll be honest, I’ve done both. And neither seem to make it any easier to deal with constantly having to cancel plans. But in the long run I feel that it’s better to just be honest. If you aren’t feeling well just tell your friend/family what’s going on. Then it’s on them. If they want to be mean and hateful about you cancelling plans that’s their issue not yours. You can’t force them to believe that you are sick.

I’ve had it go both ways when I was honest and told my friend I was too sick to make our plans. I’ve had friends be really understanding and offer to bring me soup or ice cream or something I might need. And then I’ve had “friends” interrogate me about being sick. Asking for signs and symptoms and what I’ve taken to feel better etc. I’m sorry did you become my doctor? These are not things you need to know. This is you being nosey and testing me to see just how sick I am. And I have nothing to prove to you!! If you as a friend can’t believe me for what I say I don’t need you in my life.

That’s what it comes down to honestly! If you have friends that can’t take your word and don’t believe when you say you are too ill to leave the house, you don’t need them in your life. Yes, we often have more Infections and have to cancel plans more than most people. But this is not a part of our life we enjoy. If you think we enjoy sitting at home and never getting to go out and have fun you are sadly mistaken. We crave people interaction and having fun just like anyone else. We just don’t get to do as much as we would like. To an extent we are a prisoner to our own bodies. We can’t control what happens from day to day. We just have to deal with what we are thrown and move on. And if that involves having less friends because they can’t understand the life of a person with a chronic illness then that is just the way it has to be.

We have to treasure the friendships with those who care to take the time to understand our lives. Those are the people who we need around us. People who will support us and lift us up even if we have to cancel plans. It sucks enough having to live life with all the illnesses and drs visits that we have. We shouldn’t be questioned and treated poorly when we have to cancel plans. If you aren’t a spoonie but have friends who are please remember that we don’t enjoy cancelling plans and having to stay home. So don’t make us feel even worse by treating us poorly because we have to cancel plans!

Friendship and chronic illness is hard. And it makes me sad to think about the people who have walked out of my life simply because I am sick. People who I loved like family who decided they couldn’t handle my illness. Which seems crazy to me because they are NOT dealing with my illness I am. Yes, things change! I may not want to go out to dinner or to get drinks as often but that doesn’t me that I as a person have changed. I am still the same person who you fell in friendship love with, except my body is not healthy. As many friends as I’ve Lost, I have also gained some of the best friends of my life in the past 5 years. Fellow spoonies who understand what I go through in a week. As well as non-spoonies who are kind and compassionate and understanding. For all the people who stand by me on a daily basis I am so thankful!! I can never express with words how thankful I am to have these people in my life. They help get me through every day and help me to keep a positive outlook. While also being there to listen when I need to vent!! Friendship can be hard but is so worth the fight in the long run.

With Love,

Amber