For the Family of People with Autoimmune Diseases

For the family and friends of people with autoimmune diseases,

Someone -- most likely a woman in your life -- has been diagnosed with autoimmune disease. What does that mean for you?

It can mean many different things, depending on the details. But I want to talk about some overall patterns and expectations here.  Please remember that her details may vary somewhat.

The people who get autoimmune diseases are primarily women. But the pattern doesn't stop there. We tend to be women who try very hard to take care of the people around us, try hard not to need things from the people around us, and meet all of everyone's expectations, and we have a very strong drive to get things done or accomplished in life. There is a reason we are the most likely to be impacted. Stress of any kind, whether physical or emotional, nutritional, chemical, or from any other source, tends to be a very large factor in the development of autoimmune disease, as well as the episodes of it flaring out of control.

It is likely that those of us with autoimmune diseases have genetics that make it more likely we will suffer such chronic ailments. And many of these disorders are made more likely based on the way that a woman's body responds to female hormones. So even though many men carry the genetics for autoimmune disease, many fewer of them have it manifest.  Men's system is under less load in some ways, and their stress responses are somewhat different. The chemistry to make it possible to have babies, also means that we have less margin for error about sloppy stress in our lives.

For most of us with these problems, we don't know it is happening, at first. We just feel more exhausted than usual, and keep pushing forward, trying to get everything done. Eventually, that bill catches up with us and comes due. Something starts to fail. Sometimes that is an organ, like the thyroid.  Sometimes that is some kind of nervous system or blood vessel failure like fibromyalgia, or MS. But in all cases, we eventually can't keep ignoring the collector, no matter how much we want to meet everyone's expectations, and take care of the people we love, and get all the things done that need doing.

As someone who is close to a person with autoimmune issues, you should understand a few things about us emotionally. It is often devastating and crushing to be told by our doctors that we have to stop doing all the things we love and are used to doing. These disorders will keep escalating unless we can find the ways to reduce every kind of stress on our systems, which eventually will leave us unable to leave the house, bound to wheel chairs, suffering organ failures, or dementia, and unable to do anything at all, with very short lives, in many cases. So our doctors tell us we HAVE TO STOP doing all the things.  And the good doctors start teaching us how to manage our daily lives the only way we can.

That means we have absolutely no more room to try harder to make it all come together. We have to let go of many of the things we believe are important, and some of those things will impact your lives as well. And even when they don't directly impact you, we really need your understanding what we are living with every day.  And we need your respect, love and care.

We are women who are very bad at asking for help.  We are women who will always try to sacrifice ourselves to make other people happy, even after we understand we are genuinely sacrificing our lives, our wellness and our future. It is so very difficult to need help, for most of us, that we often fail to follow our doctor's advice, more often than not, still doing much more than we should, and trying to be flexible when we shouldn't. So it becomes partially your job to think about our patterns and watch for signs, as well as doing those things you reasonably can to help us protect ourselves, rather than always waiting for us to ask. It sucks that we need that, and we hate that we need that, but it really is important to our health and safety.

You got used to a way of being with this person in your life, where she was doing way too much, so you didn't have to think about it, never had to volunteer, could beg off a lot, never had to really think about a lot of things she needs, or would otherwise do. But that was part of the broken pattern that helped her get sick, so now it is everyone's responsibility to learn to better pay attention to some of those things, and not wait for her to ask for help, and not make as many assumptions in your daily lives.  Those days of the free ride are over, and she is paying the price for them.

Why do things have to change? She won't dwell on this. She will want to have as good a day as she can, and share as many smiles as she can, because every smile is her lifeline, her little way of getting through one more day of pain. But her disorder is invisible and vengeful. What she isn't telling you is things like the following:

• Her bones and muscles ache in a way that makes her want to cry all the time, but she's exhausted with the tears, and they just don't make it better.

• Her joints and muscles are under constant attack by her own body, and everything that she does, even things as easy as taking a shower, feel like the hardest hike you've ever been on, or that day that the gym teacher pushed you so hard you could barely move the next day from soreness. That is her new normal.

• Her skin, eyes, sense of smell and sense of taste can be impacted to the extreme. Sometimes even being outside will make her blister badly, even if she hasn't been there long enough to get a sunburn. She may get sick from heat or cold changes, even though she would like to run the AC, too. She needs you to assume she needs to be asked before you change cooling and heating conditions. It will make her eyes hurt, make it hard to focus on what is happening when the sun is bright, or headlights hit her eyes. Things that just smell nice to you, will given her a headache worse than any you have ever experienced. She won't be able to control these sense inputs, and may sometimes throw up, or have to flee, or suffer in pain for days, or even pass out or go into anaphylactic shock from these normal exposures like scented shampoos, and perfumes and candles, and other products. She needs you to understand that she's not being difficult.  She could die from these exposures.  The more she is exposed, the worse it may get and more dangerous they may be. The scented product aisle at the grocery store can be debilitating, and may mean she needs help shopping, just because of the chemical assault on her system. Her skin may dry out, her mouth may get very dry, she may have painfully dry eyes, or hurt because you tried to give her a hug, even though she desperately wants to hug or cuddle you. She may even get horrible breath. She may have days where various kinds of touch are just too much emotionally or physically, even if she wishes she could take them.  She needs you to remember that it isn't personal.

• She will be exhausted sometimes. She won't know when it is coming. But she will go from ready to take on the world, to suddenly feeling like she had nothing but gym class for the last 20 hours, and she can't move, with no warning, and no outward sign. She will want to do one more thing, or run that one more errand, or fill her promise to help you with something, but she just won't have the ability. It's not anyone's fault. She wants to be able. But sometimes even taking a shower will be so exhausting she needs a nap afterwards.

• She needs to know that you are actively willing and trying to help her, and that it's okay for her to ask for your help. She hates asking, a lot. So she's doing everything she can to ask for as little as possible. But if she sees that you intentionally offer your time, sees that you try to lighten her load without always being asked, and if she sees that you do help out when that's reasonably possible, if she does ask, that will help her a great deal. It's okay to negotiate ways you can help her best, or ways she can ask for help most usefully from you. And it's okay to sometimes need to say no. She will try to understand as long as you are usually offering to help and willing.

• Her organs will be under attack in many cases. Sometimes there won't be anything at all anyone can do, except understand that she will have weird and sudden problems related to how much her organs are suffering. She may need a hospital to deal with what was only a cold for you. She may have to stay close to a toilet, or have sudden surgeries.

• In almost every case, she will have to completely change what she is eating. This is one of the hardest things the doctor will ask her to do. For most people, food is tied up in happy memories, and celebrations, comfort, and adventure. And eating out has become our break from a very stressful life.  The disease will probably take that from her and leave her with all the work, and none of the community joy.  She will feel very left out, very isolated, and will most likely be very hurt watching other people eat all the things she can't have anymore, that have all those memories and feelings attached. And the doctor will most likely make her eat mostly the foods she hates, which takes away her feeling like she's in charge of her life even in any of those small ways, while the disease has already left her helpless in so many others. It will be especially important that you understand that her food limits really make her hate life, and want to hide, sometimes, especially if she can't escape watching other people have all the things she can never have again. It's important for you to understand that even if you can still eat those foods she can't have, it may be mean to do it while she's watching, or where she finds the evidence. Your life will have many years of opportunities to enjoy those foods she can't eat. Do what you can to protect her from unnecessary reminders that she's missing out.  And be her champion and protector when family push back on her food limitation, or make thoughtless decisions to try to prove she doesn't have to eat the way she does.  Those choices are cruelty, and there are people being prosecuted for feeding people with autoimmune disorders foods that are poison, even now.  Help protect her as much as you can, even if you find it hard to believe or understand. 

• She will most likely have mental and emotional side effects beyond those related to food, too. The chemical changes in her system make her prone to depression, forgetfulness, sometimes memory loss, difficulty concentrating, and sometimes difficulty controlling her own mood when she's frustrated. She needs you to write things down for her, or remind her, without getting upset that you need to. She would remember if she could.  And she needs you to understand that sometimes it is the disease snapping at you, not your spouse.  Meet it with kindness when you can.

• The medications she may have to take, may have their own host of side effects, like weight gain or weight loss, or other kinds of illness. Please treat her struggle like it is probably much more complicated than anything she's ever faced, and assume she's doing everything she can to manage those effects, even if it looks like she's failing.  Defend her to other people who are critical of her weight or appearance, or other struggles. 

• She may have to use walking aides, or even avoid going to a lot of things she wants to enjoy with you. She may even have to be in a scooter or wheel chair, eventually. This will be very embarrassing and frustrating for her, most likely, and she will resist help as long as she can. But that sometimes means she will push herself too far, and you may need to look for ways to be that extra bit of physical support she needs in some way, whether it is running to get her help, or offering her a hand, or getting her cane, walking stick, or walker for her. But when she needs help will often be very hard to predict, much like her tiredness. She will think she is feeling good today, but the pain will sneak up on her, and the chemistry of pain will exhaust itself in her brain, and her body may literally stop working, sometimes without much warning.

• She will have a hard time finding the balance between needing what feels like far too much help with far too many things, and still wanting to take care of you, and do things with you and for you. She probably won't know how to say this, but even though so many things won't be possible, she still wants you to treat her like she can do all the fun things she used to, in terms of invites and requests. She will need to say "no" more than she used to, but the fact that you still think of her, and still consider her able enough to ask, will often mean a lot to her and her own ability to feel valuable. So if you don't mind hearing "no" sometimes, keep asking, and try not to be too disappointed with no(s). It's okay to check in and ask if you should keep asking, if it's been a while since you got a yes, too.

• She will have this struggle, at random, for the rest of her life. Sometimes, if she's lucky, she will get some long periods where things are going well, and she seems back to her old self. But the slightest virus or high stress day, or food poisoning, or toxic exposure, even if it's invisible to you, may set her body back into collapse for a long time. She will fight this fight her whole life, and may even be hospitalized suddenly. Please take her statements that she needs something urgently with complete seriousness, even if she seemed fine a moment ago.

• She is grieving the loss of who she was and all her dreams. It may help you to think of her like you would someone whose mom or dad just died, sometimes. You can't see their pain, but you know they are struggling with drowning in their feelings. Just also remember that for her, this isn't a single pain event like a death. Every week she may discover some part of herself she has lost. She will sometimes struggle to focus on the good things in that tsunami of frustration and heart break. But please understand that for her, she is losing someone she loves, all the time. Do what you can to make her smile when that is possible, and hold her hand or listen, when it isn't. But make sure you also take time to take care of you.

• She is already trying too hard. Even though it looks like all she did was nap all day long, her body is genuinely exhausted, and she needs you to respect that she hates being unable as much as you hate that she can't do those things for you anymore. Help her find ways to accept that she has limits now, even though you really want to complain that she isn't doing enough, or you feel like you're doing all the work. It's okay to tell her that you struggle with feeling like you're doing so much of the work, even though you know she would do more if she could. But say it from a place of kindness and understanding that she can't change this any more than you can.

• She is already measuring herself against all the work other people are doing, and feeling guilty inside that she can't help more. Please share that you are sore from working in the garage, but please do it without commenting on what she couldn't do to help. She wants to bond with you, sympathize with your pain, and commiserate, but she doesn't have room for more guilt that she can't take that load for you.

• She has trouble making plans anymore. She doesn't want to lose friends, or have to cancel all the time, or be late, but because she can't predict how she is feeling, moment to moment, she doesn't have many good choices. So outings are hard to plan, and vacations are especially difficult, because it is so hard to say if she will feel okay, and takes so much extra planning for her to stay well enough to participate. It is especially important during these times that you be forgiving and very considerate of her needs, and do anything you can to lower her stress and see that she eats the way she needs to eat.  She will sometimes get tired and frustrated, and try to tell you it's okay to do whatever is fast, instead of what is important, in places where she doesn't have access to the things that would help at home.  Don't believe her.  Find a way to see that her real needs are met when you can. 

• She will already be her own worst critic. In her head, she will most likely be struggling to avoid chewing herself out regularly.   Nothing you can say will possibly be as harsh as she is on herself.  So she needs you to be especially careful of the things you say to her, and how you say them.  It's okay to have your own feelings, and to express feelings, but you always have a choice in how you say something. There is a big difference between grumpily demanding “why do I have to stop eating wheat (candy or whatever else), just because you're sick all the time!?” and saying “I wish there was a way to make you better, so we wouldn't both have to skip candy and soda.” The first statement becomes an attack on a person who can't help that she has this problem. The second statement is a way to express your frustration in a way that shows you care about her, and know that she misses those things too. It is even okay to be mad at her disease, but it's not okay to take that mad out on her. Tell her that you are mad at her disease, too, if you want. But don't yell at her for it. She can't help it.

• Sometimes, when things are really bad, it may seem like she does a lot of whining or complaining, or constantly talks about her doctors, diet or illness. It's okay to ask her for a topic time out, or tell her you're feeling a little overwhelmed with the subject right now, and negotiate a time frame for a break, or ask whether what she needs to say is really important right now, or if it could be postponed. But please remember that any amount you're hearing about, is only a tiny portion of what she's dealing with every day, and she really wants to feel like you care. It means a lot to her to feel like you want to really understand her needs and struggle, and how to take care of her when she can't speak for herself. So whatever you say, say it with kindness, rather than accusations or criticism. And make sure that you understand that she may face emergency situations where you have to be able to tell her doctors what foods and medicines will make her sick, because she can't do so herself. She isn't telling you just for sympathy. She really does need you to be able to act in an emergency to protect her life and ability to heal.

• She hears from all sorts of sources in her life that all she really needs to do is (insert suggestion here). She will hear this from many directions, all day, and even some that should be trustworthy sources, won't be. She is struggling all the time to manage all the people with advice, and probably gets very tired of telling people that their quick fix won't help, and why. So sometimes, as her family, it's a good idea to ask if she's up to hearing about the suggestion a friend or co-worker made. And sometimes just listening to her means the world to her, instead of offering her advice at all.  When you can, thank someone for the suggestion, for her, but be firm that she and her doctor are handling those kinds of details.  One less time she has to tell people to stop really helps her out. 

• Her ability to exercise like normal people is probably broken. This will really frustrate her. This is especially true if being overweight is an aspect of her immune problems, and the whole world is telling her to eat less and exercise more. Because her system is attacking itself, exercise that would make you feel better, and more healthy, will often send her into a miserable flare, and to bed for days. Her system is constantly fighting a war against itself, and so, much like any war that goes on too long, it's hard to keep resources flowing to all the troops. So her body is doing incredible work just to function. If she tries to add aerobics, there is a very good chance the mild swelling and damage that comes from any normal work out, that you would heal in hours or days, will take her days or weeks, and cause swelling all over her body.  If she restricts calories on top of the problems she is fighting, she can be starving to death in terms of resources her system needs, even while she's fat on the outside.  The lack of nutrients from calorie counting can even lead to organ failure.  It just isn't an option.

• She will hate the need to point this out, but the consequences of not doing all these things to take care of herself is that she is at increasingly higher risk of severe immune reactions, anaphylaxis, other more severe autoimmune disorders developing, that will leave her even more handicapped, and even increase risk of death from all causes. This isn't optional for her. She isn't ever trying to be a pain, or demanding any more from you than she has already had to demand of herself. She may not even be right about all of it, but she's operating on the very best and most current information she can find, so respect that effort in how you choose to respond. Be aware that for everything she's asking you to do or not do, it's probably half what her doctor wants you to help with or avoid. You need to recognize that, and treat it like the understatement it is, rather than handling her like she's a crazy health nut with unreasonable expectations. It's okay to mourn the loss of those things in your life, if you need to. It's okay to say you resent the genetics that make all of this our problems to face together. But remember that she hasn't gotten to choose, and needs your kindness in how you pick your words.

• And perhaps most importantly, her immune system doesn't work properly anymore. It has lost its ability to tell the difference between her own cells and those cells that attack the body, like viruses and bad bacteria. Because of this, it is especially important that she be extra careful about keeping her system as healthy as she possibly can, because the way her body works, the more it has to react to, the more it tends to attack other things accidentally. So what would just be a cold for you, causes organ damage for her, that may shorten her life, or similarly severe problems. So it's especially important that you help her live a long life by avoiding situations where you spend extra time around sick people. It is critical that you are careful about washing your hands, and always cover your mouth when you cough or sneeze. She will feel guilty telling you, but she NEEDS you to eat healthy, so that you won't bring home viruses that just give you sniffles for a few days, but instead get her sick in a way that causes permanent damage, or leaves her hurting and unable to recover completely for a month or longer. Your days of junk food, and ignoring whether your friends are sick, and forgetting to wash your hands after sneezes need to end, because all of those mistakes can actually shorten her life the more they add up, and add stress and damage to her body. She needs you to protect her from those things that add stress and activate her immune system as much as you possibly can. It's not just a matter of bad manners or personal choices anymore. A cold isn't just a cold. You are protecting someone's life besides your own, and hers is much more fragile than it appears.  And there is no pain like the feeling that your choices led to the pneumonia that killed someone you love.

So, as you can see, life gets complicated dealing with autoimmune issues. She wants to be honest with you, but she's also trying not to overwhelm. Sometimes she won't guess right on what she says or shares, or how she shares it. But, unfortunately, autoimmune disease isn't just her cross to bear. She will try to protect you from the parts she can, but the choices you make every day matter. You are making choices about her life, even when you've never had to think that way before in terms of what chores you help with or things that used to seem like personal decisions with low risk. It matters that you offer to help, even when you don't have to or want to. It matters what choices you make to protect her wellness. It matters that you think of her autoimmune disease as everyone's responsibility to manage and everyone's illness to bear. 

When you've taken responsibility for your part of this set of problems, and make it “our journey” instead of “her journey” you will get to enjoy the best of her for as long as she has it to give. It can be lonely to be sick. Do what you can to connect in whatever ways are available, and to share this journey between you. That kind of loving support does more to heal both of you, than any other choice you can make.  Be her cheerleader, because she is already her own critic.  That position is filled.  But cheerleader can help balance those voices.

Thank you for loving someone even when it isn't easy. We appreciate it more than you can know.