Dear Significant Others

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Many people have contacted me asking for advice about relationships and chronic illness. I have discussed this subject with a lot of you. This is what I heard. This is what I know. I am not an expert. What works for me may not work for you. What works for others may not work for me. What we can do is spread information. We can share ideas. This is the start of it. I hope to have more blog posts about this as we continue to get feedback.

Dear Significant others

We know you work hard. We know you are trying. We know. We see it, even if we can’t always manage to acknowledge it.

We understand that most of  you came into these relationship with the expectation that things would be at the very least split fifty fifty.

We get that. We understand that our illness is robbing you as well as us. We know it scares you as much as it does us.

We still need and want to be loved, to be shown that you love us still.  We understand that you may be struggling to find ways to do this that also works with our chronic illness as well.  There is a learning curve for you just as there is for us. It’s okay to tell us that. It’s okay to say , “I don’t know what to do but I am trying.” We really don’t expect you to be perfect. Really.

Sometimes we are not ready to answer questions about what a new diagnosis or symptom means. Please know that it doesn’t mean we aren’t touched you asked. We are just as frustrated that there is something new or different to adjust to again. It means a lot when you take some initiative and look up information. Don’t stop if at first our response is to snap or brush it off. Sometimes we can only absorb so much. Just like you.  Don’t stop!

If we were good at telling you what we needed you to do to help us before and now we are not…..we need you to be extra observant. We need you to see what we can’t say. We know that its not fair. We know that it is frustrating. If last time we needed you to do the dishes look and see do they need done now? We know this is a learning process. We really do deep down. It is not always so easy to express this.

Ask us if there is a good time to discuss what is going on, discuss how we can help, discuss how you can help us. In truth we need to sit down and discuss it. We need to mutually agree to leave feelings at the door. This discussion needs to be about what we can’t do and you can do. This discussion needs to be about what you can’t do and we can do. This discussion needs to be about compromise.

I am not going to tell you what to do to show love and support to your significant other. This is something that is truly unique to each couple.

I can tell you what won’t help. I can tell you what doesn’t help.

What doesn’t help is every time we say we can’t…we receive an attitude. Or worse no response. We can’t communicate if we are always rebuffed. We aren’t saying you can’t have an attitude here and there. If it does happen, if there is an issue, come back later and try and communicate. The fact that you had an attitude is not the issue for us. We get that. Come back! Talk to us! We all have our moments, we get that.

There is a time and a place for sarcasm. However if all we are getting back is snarky comments, degrading comments, negative comments. We are pretty good at doing this to ourselves. Again I am not saying this can’t ever happen ever. It is going to happen here and there. A balance is what we are looking for. Remember communication is key. If it is all negative……

What doesn’t work is telling us all the time that we are over reacting. How would you feel if you were experiencing these symptoms? How would you feel if someone told you , you were over reacting? On the same note, please do remind us to put ourselves in your shoes as well.

The more you communicate and ask for communication in return the better it is.

So….you thought that was all it was didn’t you… Communication. Hmm.. yeah there is also this other thing called sex. Generally people with Chronic pain and or illness or both are not interested in it. Generally. There just isn’t much we can do about that. There isn’t much you can do about that. It happens.  So…you know in high school when they talked about how to practice abstinence…..yeah…this time its just a tad different. The more you work as a partnership,especially those of you with kids in the mix too, the more likely it is to happen. Not always but its a great start. It really really really truly is not personal. It does not mean we love you less. Sometimes its hard to talk about because we are selves are frustrated by it as well. We want to want it but its not always possible. It means when it does happen, be gentle be understanding and cherish it for the gift that it is. Because remember  it is a gift. It is not a right of a relationship.

It is not all about either of us. Its a team thing. A partner thing.

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