Jessica Harris

@jessica-harris-13 | contributor
Chronic illness fighter and advocate. Owning my story and helping others along the way.

Lupus, Fibromyalgia: Why It's Important to Talk About Chronic Illness

If you’re anything like me, early on in your diagnosis (along with the many other emotions going on) you felt a sense of fear and shame when thinking about discussing your new illness with others. I justified not talking about it by telling myself that my lupus didn’t define me and I didn’t want people’s pity, or to be judged and perceived as “weak.” The truth was really more along the lines of – I didn’t want to talk about it because talking about it made it real; if I could fake being healthy to those around me, then maybe this wasn’t as serious as my doctors were making it out to be. Regardless of the reasoning, I have learned there is such value in educating people on the realities of chronic illness and sharing your story. At some point after getting sick, I would venture to guess that everyone living with a chronic illness has felt alone and isolated from those around them. For me, I was 20 years old and anytime I went to see my specialists I was by far the youngest person sitting in the waiting room. My friends who were my age weren’t dealing with serositis and near constant pain – they were in college, partying and living the life of 20-somethings. My coworkers weren’t having to regularly use their leave to go to doctor appointments and go get lab work done on their lunch breaks. All of this led me to feel completely alone and like nobody around me could relate to what I was going through. I would stress myself out thinking about what would happen when I didn’t get better. What would happen when I finally did tell people? What would they think? Would they judge me? Would they think I was weak? Would they think I was exaggerating my symptoms? Would my friends push me away because they couldn’t relate to me anymore? Would people stop wanting to work with me because they didn’t think I was up to the challenge anymore?   These are the things that would keep me up at night, playing out the worst case scenarios in my head. And unfortunately, in some cases, the answer to those questions was “yes,” but in the overwhelming majority of the time the answer to each of those questions was “no.” As a matter of fact, as I slowly started to open up to the people I was closest to, I was met with an overwhelming bout of love and compassion. I had friends who, when I couldn’t make it out or had to cancel plans, would show up at my house and just sit and watch TV with me while I was curled up on my couch. I had coworkers offer to drive me to appointments if I needed it, and who still regularly call and check on me. I had an overwhelming number of people rally around me; it was the most humbling experience. Eventually, I got involved with a few online support groups for lupus and fibromyalgia. I would share my story, and was able to see all the people around the world who truly understood what I was feeling and dealing with; suddenly I wasn’t alone anymore. I could share my story and feel completely understood, and I could learn from other people and their experiences. In these groups, I started to notice that every time I would share what I was going through – specifics about my symptoms, what doctors said about those symptoms, good experiences, bad experiences, etc. – people would reach out and tell me about what they were going through, experiences they have had, symptoms they had experienced, treatments that had worked, and so on. Whether it was to answer a question or offer advice about something I was dealing with or how sharing my story had helped them in one way or another, there were these beautiful patient communities that could lift my spirits and answer questions about what I was experiencing. It was beautiful. I started occasionally sharing information about lupus and chronic illness on my personal social media pages, and I was surprised at the number of people who would reach out thanking me for sharing the information. They would tell me things like “I have a friend/family member with lupus, but I don’t know much about it” or that they had no idea what lupus was and how it has affected people’s lives. And after a handful of these reactions, I realized how important it is for us (as chronic illness fighters/caretakers and loved ones of those fighting chronic illnesses) to get information out there and educate people on these diseases. There are over five million people around this world with lupus, and there are still people who have no idea what it is (I was one of them!). And it’s not just lupus – there are so many people struggling every day with chronic illness, and the amount of people who have no idea what some of these diseases are is shameful. Could you imagine if you started talking about cancer and someone told you they didn’t know what that is? This lack of information is where misconceptions come in, where judgment comes in. Within the chronic illness community, there is always talk about the ignorance of some people who are lucky enough to not struggle, or know someone struggling, with a chronic illness. Well, this is one way to help change that…sharing facts about our illnesses and what it’s like to live with them can help change that! All of that being said, I would be lying if I told you that opening up to people about my health struggles was only filled with love and acceptance. There were people who judged me. There were people who questioned whether I was exaggerating. There were people who offered nothing but their unsolicited (and uneducated) advice and passive-aggressive comments. There were people who distanced themselves from me because I wasn’t the same person I used to be. There were people who were supportive in the beginning, but as time went on and I didn’t get better, got tired of my excuses for not leaving the house and my life not going back to normal. And even having experienced all of that, I still believe it is so important for those of us living with these diseases to talk about it! When you keep pieces of your life bottled up and hidden from those around you, it puts a wall up and isolates you from those around you. I have never wanted lupus to define me, but – like it or not – it is a part of me and I have a need to talk about it just like I would any other part of my life. Who better to educate than those who are living it? Who better to lean on than others who wake up and face it every day, just like you do? So don’t be afraid to talk about it, because it is so important! Don’t be afraid to share information with someone who knows nothing about it. Don’t be afraid to ask for advice from people who are living it too. Don’t be afraid to let your story inspire and help others. And don’t be afraid to find your tribe, your people who you know you can depend on, and tell them what you are going through. You will be surprised at how much of an impact sharing your journey has. We want to hear your story. Become a Mighty contributor here.

When I Have to Cancel My Plans Because of a Lupus Flare

I planned to get a lot done today. I wanted to start prepping my vegetable garden beds for the fall while we had some nice weather today, move the remainder of my potted plants into the house, get some cleaning done around the house, and make some progress on my crochet Christmas presents for people. Like I said, this is what I had planned for the day – but this is not what the day had planned for me. As soon as I woke up I knew things were not going to go as I expected. You see, I have had a terrible week… my joints have been more achy than normal, I had a massive migraine after an infusion on Tuesday, I had a few days of my pericarditis along with some palpitations rearing its ugly head, and I’ve just been feeling more run down than normal. Then this morning I woke up feeling exhausted, my joints screaming, and a low-grade fever… all signs of the beginning of a lupus flare. Rather than getting to everything on my to-do list, I moved the plants inside, took a shower, brushed my teeth, put on a pair of sweats and favorite “flare day” T-shirt and climbed back into bed. I’ve got my computer, my favorite rose water spray, lots of fluids, and Netflix… everything I need to take it easy and rest today. This is one of the things about lupus that has been very tough for me to come to grips with. You can have as many plans, schedules, and timetables as you want, but when lupus tells you you’re not doing anything today – you’re not doing anything today. And that’s exactly what you need. I look at lupus as a relapsing, remitting illness, in the sense that you will have days and weeks when you’re able to get things done. You may have some aches, pains and fatigue, but you’ll be able to manage your symptoms – then, out of nowhere, you will relapse by having a flare-up, and your symptoms will knock you on your ass. No matter how much you fight it and push back against it, those bad days are going to come. There’s nothing you can do about it and fighting it only makes it worse. Because of this, you have to learn how to ride the wave. Take advantage of the good days, but be able to let go of plans, expectations, and judgment when those bad days arrive. Lupus is a disease where your body is, in the simplest terms, attacking itself. When you get the flu, part of the reason for the fatigue you feel (and the reason you are told to rest) is because your antibodies are fighting against the foreign invaders, trying to rid your body of the bad stuff. When you have lupus, those same antibodies and your connective tissue are attacking you, leaving you feeling flu-like symptoms on top of whatever way lupus affects you. So, as you can imagine, with all that going on in your body – you need to rest and recuperate when your body calls for it. Being able to take each day as it comes and accept your body’s fluctuating limitations is such an important lesson for anyone struggling with lupus, or any type of chronic illness. There will be days where you have to cancel plans. There will days where dirty dishes will have to sit, piled up in the sink. There are times when you’re going to have to use that grocery delivery service, rather than running out to the store. There are times when the most you will be able to do is brush your teeth and move from the bed to the couch. You have to be willing to let go of what you thought you were going to accomplish that day and remind yourself that these things are not selfish, lazy, or whatever judgment your brain comes up with. This is what is going to get you to those “remission” days quicker. So if, like me, you are in a full blown flare, or your chronic illness has you feeling run down, grab a blanket, put your feet up and bust out the Netflix… this is exactly what you are supposed to be doing today! Follow this journey on Lovely Lupus Life. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: mavoimages

10 Mistakes I Made After My Lupus Diagnosis

Unfortunately, there is no guidebook handed out along with the diagnosis of a chronic illness; it’s more of a learn-as-you-go experience. Life will likely become a series of trial and error when it comes to figuring out how to live with your illness; you will learn from your own experiences, as well as those of others. Some of the best advice I have gotten throughout my journey has come from the “what not to do’s” of other chronic illness fighters. So here a few from my highlight reel! 1. Not taking my diagnosis seriously. Both when I was wrongly diagnosed and for a time after my actual lupus diagnosis, I chose to ignore the severity of my symptoms/illness. I can list off numerous examples of how I willfully ignored what was happening in my body, including: shoveling a little less than a foot of wet snow when my fingers were so swollen I couldn’t fit them into my gloves and had to stop every second or third shovel-full because the chest pain was too bad because I had been dealing with a bout of pericarditis for the past few days, or the time I refused to go to the hospital when I had been home for half a week with body aches, sweats, a 105-degree fever and not able to keep solids or fluid down (turns out I had a kidney infection, but I still fought being admitted to the hospital!). The bottom line is, it is serious – especially when you don’t take proper care of yourself. 2. When I felt good, I stopped taking my medications. This seems silly when I say it out loud, but I did have periods when, for whatever reason, I just didn’t take my medicine. I would sometimes get to a point where I felt good for a while and then I’d start skipping doses and not really stress about it. I paid for it, dearly. 3. Not listening to my body. When I am able to stay mindful throughout the day, rather than constantly pushing myself and speeding through life, I can feel the warnings from my body that I need a break or that my body is gearing up for a flare. I love a good body scan meditation to help me with this; it helps me to really tune into my body and see where I may be holding tension/where exactly my pain is coming from and just generally how I’m feeling. When I was trying to push my body and will it to accommodate the fast paced life I was used to, I would be able to go, go, go and fight through for a few days, but then I’d wake up one morning feeling like I was hit by a freight train, unable to get out of bed and have no idea why! Well, the reason was because I didn’t pay attention when the fatigue started to set in (the body’s warning sign), followed by the joint swelling (yet another warning sign), followed by the brain fog (and another warning sign), followed by the body aches (the most obvious warning sign). The key is to take a few minutes and tune into your body… Check in with yourself and see how you are feeling in that moment.   4. Pushing through the pain. This is a big one. There were so many times when I could feel my joints starting to swell and my fatigue starting to really kick in, and I would push myself for that extra hour (or three) until I couldn’t see straight. You may be able to get those extra few hours in at the office today, but in the end, I think the pain you will suffer really isn’t worth it! 5. Feeling ashamed. I still struggle with this to some degree. When I got sick I made the decision that I did not want others to know. I told my mom that I didn’t want her talking to anyone about it, I didn’t tell many friends, let alone anyone from work. I felt that people’s opinions of me would change, I would no longer be the strong woman who could handle whatever was thrown at her — they’d see me as weak and less than. I didn’t want people’s pity. I made assumptions about how others would see me based off of how I, subconsciously, saw myself. When my boyfriend and I split up, I thought that was it, I would be alone forever because who’s going to want to take on that kind of baggage!? Who wants to be with the damaged sick girl? I defined myself by my illness and assumed that everyone else would, too. What a waste of energy! 6. Compared my life now to my life before getting sick. Before getting sick, I could work 10 to 12 hour days and still go out after work; I’d be ready for bed when I got home, but nothing near the level of fatigue and pain that I wake up with in my body on a good day now. So after getting sick, I would constantly compare my level of performance or energy now to my level of performance before getting sick. In social psychology, this is referred to as upward comparison, and there is no benefit to it; as a matter of fact, it leads to depression/decreased self-esteem/etc. The truth is, there is no comparison! We are not the people we were before getting sick, so why do we judge ourselves like we are? 7. Refusing to accept or ask for help. It is so important to have a strong tribe of friends/family and to be willing to ask for help when you need it. Whether it’s driving you to a treatment, bringing you chicken soup when you’re too sick to cook for yourself, picking up around the house for you every once in awhile, or shoveling your driveway! It’s OK to not be perfect and it’s OK to not get everything done by yourself. 8. Not being my own advocate. This is so important, it really should be number one on this list! I stuck with a doctor for three years even though I knew he was not listening to me or my symptoms. I knew there was something very wrong going on in my body, even if he refused to acknowledge it. Doctors have fancy degrees, and that’s great, but you know your body and what you’re feeling better than anyone. You know when something is not right and with the amount of information at your fingertips — with the Internet — there’s no excuse for not being a well-informed patient! I now treat initial appointments with doctors like an interview, and if I don’t feel like I’m being heard or a doctor is a right fit for me, I simply leave and find someone else. Never stay with a doctor who makes you feel like you’re not being listened to or taken seriously. 9. Setting hopes for recovery too high. I think everyone goes through this early on in their chronic illness journey. My goal was to find a miracle pill (or pills) that was going to cure me. I understood that I’d likely always have to take it, but it was essentially going to eradicate all these obnoxious symptoms so I could get back to my life. Probably a year into playing with treatment combinations for my fibromyalgia, I was sitting in my primary care physician’s office complaining about my pain and fatigue and she said to me, “Look, you have to accept that you are never going to be completely pain-free and you will always live with some degree of fatigue. The goal is to get everything to a manageable level. but you’re setting your hopes too high for what a pill is going to do for you.” I was speechless, but I needed to hear it. 10. Not exploring alternative/complementary treatment. When I was first diagnosed, I was willing to try any and every prescription drug anyone would throw my way if it would stop the lupus flares. I was desperate for relief. But, the truth is, prescription meds are not necessarily the only options for relief out there and they are worth exploring. I choose to have a mix of traditional lupus treatment and complementary medicine (yoga, massage, acupuncture and a variety of other things). I have done a lot of research and that was the best fit for my life. That being said, I am not a medical professional and all courses of treatment should be discussed with your doctors. Follow this journey on A Lovely Lupus Life. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by katyau