I’m sorry I’m not better.
When we got married, we vowed to take care of each other In sickness and in health, yet we had no idea what we would be faced with as we started our path together. Learning that I have multiple auto-immune diseases, muscular dystrophy, a lack of antibodies against most common colds were actually blessings. I had been fighting lethargy, weight gain, fatigue, so tired…fatigue doesn’t actually describe it. Skin problems, hair falling out, hot flashes, constantly sick, I started to see I didn’t have much to bring to the table. We finally had answers to the why but there was no treatment to change anything. My husband has been a saint and takes care of me daily. He knows when I am at the point of exhaustion, he knows when a little faint sound is starting to drive me mad. He knows me. But still he doesn’t.
This letter is for all the spouses who married an unknown (or known) illness and what we want you to know. I can’t speak for all women, but I can speak from experience with our own marriage.
- I want to be a professional badass.
The idea of an idle job always bored me. Super simple, routine, day in, day out, same thing over and over. I want excitement, I want hectic, I want to be in demand, I want to make enough to support us all. Unfortunately, when my body becomes stressed, the lack of antibodies comes into play as toxins and pathogens begin to take over and attack my immune system. I am left sick, weak and unable to function for hours or possibly days. I would give anything to change that too. I have implemented many new habits which keep this from happening less and less but the reality still exists. If I push too much, I will make myself sick. This is never what I intended for us.
She never planned on handing over the burden to you to carry alone. She needs to know that she is not at fault here. She needs to know that she is not the only reason you have to work so hard. She wants to contribute more but every time she tries, her body fails. It’s not that she doesn’t want to work, it’s not that she doesn’t want to be the breadwinner. It actually consumes her daily knowing what she cannot do. She needs to know you don’t carry blame towards her.
- I constantly feel like I am failing. I feel like I am not enough.
When you are unable to contribute enough, or do everything that needs to be done, you are left feeling like a failure. We go to bed every night with millions of thoughts running through our mind. The errands that need to be done, the lunches that need to be packed, the bills we have to pay, we are overwhelmed with thoughts and they do not shut off. Throw in some added anxiety and it’s a real rodeo!
She knows she needs to do more laundry, She knows she needs to do the dishes, the kids need so much but instead, all she can do is sit on the couch and close her eyes for just a moment. Of everything left to do, her body simply will not push further. She is tired, all of the time. She goes to bed knowing she did not complete her to do list, she knows that she likely will not complete it tomorrow either. She needs to know that it is okay if it all doesn’t get completed and she is still worthy of love and belonging.
- My body hurts.
With autoimmune issues come inflammation in the body. Add in the continuous breakdown of muscle cells and the lack of function to your mitochondria and you are left in a constant state of pain. When I take a break from sweeping or doing the dishes, it’s not because I don’t want to complete them or have no attention span. I do sometimes think like a squirrel but this isn’t it. Standing makes a horrible pain rush through my body. My hips start burning, I feel like my spine is rubbing directly on my tailbone, my feet feel bruised and my upper back feels like there are fiery stones pressing down. I have to stop and move or sit down, I have to take a minute to remind myself it’s okay. There are so many times where I have gone to the bathroom or ran to the store just so I could have a moment to cry.
She doesn’t want to feel so much pain. She would give anything to make it stop but she can’t. Sitting hurts, laying down hurts, standing hurts. She can’t avoid or escape the pain. When she says “I hurt” she is not trying to avoid something. Her body has hurt all day and eventually it becomes unbearable. She needs your support. Whether it’s a back rub, a simple “it can wait” or she needs to just cry, hold her. Let her know that she is not alone. While you may not know the extent of the pain or relate to it, you know she is hurting, you know she is not well. She needs you to be her safe place to let her guard down.
- I hate being bullied
Sometimes, we have people around who mean well and don’t think about the things they say but they come off as very inconsiderate and selfish and quite frankly, sounding like a bully. We (women who have a chronic illness) don’t really care that you raised 7 kids and never took a nap. That is great! Guess what, my body physically will not allow that to happen. I don’t really care if you work full time, keep an immaculate house and have sex nightly, again….that is not my reality and it sure as hell doesn’t help anything to hear how we are failing compared to you.
She needs you to stick up for her, she needs you to shut down the criticism, she needs you to do it out of love and respect, not because you feel sorry for her. She could also use some extra time with you alone, holding her, telling her that those things are not going to prevent you from loving her. Believe me, she spends enough time telling herself these things and comparing herself to others, she doesn’t need anyone else doing it for her.
- I still want to be treated like your queen
Never in your marriage does she want you to turn to her and say we can’t do something because of her illness. If she suggests a night out dancing, she doesn’t want you to second guess her decision. She knows it might be painful or cause her to be worn out the next day, but she doesn’t want the illness to prevent life from happening. She doesn’t want to be treated like she is your weight that holds you down, She doesn’t want to be the reason we cannot achieve goals. Don’t set such high expectations that if a flair comes up or pain strikes, that your entire night is ruined. She wants spontaneity, she wants romance, but she NEEDS understanding.
- I need you to understand my limitations
There are some things she wants to do but she knows her body will not allow her to do it. It’s not about believing in herself or being invincible…She has enough strength and courage to lead an army. What she doesn’t have, she doesn’t have a fully functioning body that works like it should. She doesn’t want to hear how easy some tasks might be or that it might only be temporary. She knows that. What she really needs is to know that you are there and support her if she can’t carry out the task. She carries so much pressure to be normal, to not be chained to her illness but some things are simply not possible to escape. Don’t make her feel bad for not being able to do what so many others can do effortlessly. She is limited. She has limitations, she has a huge weight holding her down. Her all is not the same as other women. Giving her all could actually kill her. You never know when she will push too far.
- I can’t say no
The last thing a woman wants is to look like or admit that she is failing. She will take on the extra project at work. She will volunteer at the school or at church. She will insist on doing things a certain way, she will insist on doing more, she will agree to a group dinner or carpool. She will sign up to be team mom. She doesn’t want to let anyone down so she says yes even though it will make her sick. Sometimes she will need you to intervene and say no for her. Turn down the invite, say someone should probably step up for cupcake making. She is too busy to help this time. She hates being the one to let others down. She hates admitting she can’t do it all. A simple no from time to time will help her so much!
While none of these will reverse her diagnosis, take away her pain, give her the energy to run a marathon, these will still help her feel like a woman who is loved, wanted and supported. We don’t want you to fix us. We can’t be fixed. We have accepted that. We don’t want pity. We don’t to be someone you “have” to take care of. We want to be the woman you get to support. I would never have been able to fight this alone. My husband has been my rock, my strength when I couldn’t give any more. We all need someone to help us from time to time and she needs you! Don’t give up on her or get frustrated. When it gets hard, confide in her. She knows it’s not easy, she knows your role is just as stressful and she wants to be there for you. She loves you, she appreciates you, she is grateful to have you in her life.