These are the things that I would like you to understand about me in case you've wondered where I've been or why you haven't heard from me in a while or before you judge me, because let's face it, judgment is a normal part of how we process differences and problems we face or see in others. It's ok.
Please understand that being sick doesn’t mean I’m not still a human being. I sometimes spend my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about life, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but when I get the flu it sparks a chain reaction that lasts for months. I'm not miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not swollen, or in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you don't look sick!” There are days when I just cope.
Please understand that because I could do "it" yesterday, doesn't mean I can today. "it" meaning, cooking, cleaning, laundry, lifting my 4 year old up on my hip, gardening, or running errands. With a visible disease, you often prove to the world with one look that you're different. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of angioedema.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable”, "allowing water to touch my skin" and so on, it applies to everything. That’s what angioedema does to you.
Please understand that angioedema is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t (help) me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally.
Please understand that “getting out and doing things” doesn't always make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me and garner a reaction. I can pretend and keep up appearances as good as the next person, but that's just to make you feel better.
Another statement that hurts is, “You just need to push yourself more, try harder, find a better Dr. or someone who will really help you, if only you lost more weight, you'd feel so much better and your illness will go away”. Obviously, angioedema can be experienced internally, such as in abdominal or bowel attacks, or can be visable, such as extremity and facial swelling. Sometimes participating in a single activity for a short or a long period of time can cause more damage. You can stub your toe and say ouch, I stub my toe and my foot swells, I get hives and can't walk on that foot. Angio also puts me at risk for a multitude of auto immune disorders that use my current disease as a pushing off point. I have also developed arthritis and in-tolerances to wheat. Prednisone is my only saving grace, but is a devil in disguise. You gain weight, in my case it's 30lbs in one year. I have wild mood swings, hallucinations, thin skin, numbness in my fingertips, itching spells and sleep deprivation, not to mention the fact that you have to recover from your medication after you recover from your flareup. Most of the time I'm just self psycho analyzing and I feel crazy some days. Many who suffer from my style of illness are on anti anxiety medications. For now I am not, but have thought it might help. I also am unable to take NSAIDS, many herbal medications and I react to animal bites, plant contact, injections and topical analgesics. I've been on synthetic auto immune suppressors for so long that they leave me with many side effects. You can’t always read it on my face or in my body language how I am feeling. I often feel as if I live a lie because I'm often not honest with family and friends how I am feeling. Lately I haven't been as good as it and it's become increasingly hard to hide my "secret" life. Angioedema may cause secondary depression, but it is not created by depression, obesity, or mental deficiencies. I developed my illness from a molecular change in my body due to a miscarriage in 2009. I have since had two more. I've also been advised not to try and get pregnant again because it will "probably fail", so the next time you ask me when we're going to have another baby, don't please. This doesn't mean that I am ultra sensitive to others having children, in fact I am always happy when hearing of babies and I love to celebrate it. It doesn't make me sad, it's just hard to explain when you ask and when I have explained it, that person typically feels terrible as if they've insulted me or they go on to feel guilty for asking.
Please understand that if I say I have to sit down, lie down, stay in bed, take these pills or get to my doctor or hospital, I probably mean business, but I've been known to work through anaphylaxis by meditation and holding and epi pen in my hand all because I dread the ER.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. If there were something that cured, or even helped people with my form of angioedema, then we’d know about it. Drug companies are working on treatments for us right now, but in the US, the options that are available have very negative side effects, and aren’t able to be used by everyone. I wasn't one of the lucky ones to get the hereditary version of this illness. I currently have 8 specialist physicians involved in my well being, non of which collaborate and some of which have to be reminded each time I visit the details of my illness. It's not easy to accept that I'm just a statistic and that there isn't a whole lot of research going on, on my behalf, which is why I do most of my own research on therapies.
Angioedema is hard for people to understand, because it is so rare. Even those of us with it may never meet someone else that has it. It wreaks havoc on the body and the mind. It is exhausting to explain my illness over and over to the same people. It is equally hard when those that are closest to you have no idea what it is or how to pronounce it. I am alone in this illness. I have no local chapter or support group, they don't exist. I do have fellow IA friends from all around the world and that is helpful. I am one of the lucky ones that has a husband who picks up the pieces and covers my deficiencies. He's constantly making up for my short comings. I also have a Mom who drops everything to be a babysitter.
The hardest part about my disease is the effect it has on my child who sees me flare and misses out on an energetic fun Mom when I am flaring. He also worries about me constantly and copes by making silly jokes about my huge puffy face or lips. He has had to become very independent because there are days when I can't brush his teeth or wash his hair, button his pants, buckle his car seat, pull his shirt over his head, spread his peanut butter and jelly, all because I don't have the use of my hands.
I like being alone to figure it out, I like not having to talk about it, but just this once I'll tell you like it is. I am more empathetic, understanding and caring because of this disease.
These are just a few that I can actually show you. Face swelling from stress, fingers from accidentally pricking my finger on a thorn in the yard. The hand from a cat scratch, the other set of fingers from typing to long, the ankles from taking a mile long walk along a beach.
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