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    • #16369
      Kathleen Sheffer

      I absolutely love @brittany-foster‘s latest column post about the valuable traits she brings to her relationships. Can you relate to Brittany’s observations?

      Realizing My Worth in Relationships

      I, too, have felt excluded because of my illnesses, and strive to practice inclusion. Just like Brittany, I like to think I provide chronic relief (though it turns out, not everyone enjoys this coping mechanism).

      Chronic illness crystallizes our priorities. We love more fully today knowing tomorrow isn’t guaranteed.

      My current romantic relationship has taken twists and turns I could have never foreseen. I’ve had to draw upon my ability to love unconditionally to overcome challenges life has thrown us. Part of this ability comes from the way my friends and family have loved me through all the challenges in my life (and drug-induced temper tantrums, and okay, just regular temper tantrums that I can’t blame on steroids).

      The other part comes from working to focus on being present in the moment. Most of my decisions are based on a short timeline. If I die tomorrow, will I have regrets? If I die this year, will I wish I spent the year with him?

      Do you have similar thought patterns? What do you value most in your relationships?

    • #16373
      Brittany Foster

      I totally have the same thought processes and in the beginning of my romantic relationship with my boyfriend I did question it a lot and thought “can he handle all of this?” It took me awhile to realize that people don’t just “know” how to handle the chronic illness world. My family and my mom has been there for me since the beginning so they just “get it” I didn’t realize all the explaining I needed to do in order for my boyfriend to understand his role and what he needed to do. I thought it was just something that was second nature because it ALWAYS was second nature for me. But I realize that those qualities about myself and the care that I can show even through my own difficulty is actually harder for other people because they aren’t used to balancing both. When my boyfriend has a tough bout of illness that’s the only thing he seems to be able to focus on (which I get) but being chronically ill totally numbs us to the fact that they really can’t multitask and think about others when they’re sick. How weird ! lol! It’s like a different universe we have lived in all this time. But as I said in my post, it definitely gave me all these qualities that I’m grateful for an I know I bring that and MORE to the table in any relationship. Took me awhile to realize my self worth though but I’m glad I did.

    • #16520

      After a decade of post-diagnosis arguing, I finally got my parents to understand what was going on a few weeks ago. They can be pretty dense so it did involve throwing around phrases like “terminally ill” and “you will bury me”… in front of 50 other people at a restaurant. (Then, I think, they finally believed me!)

      I can’t blame them entirely because I’m a “rarest of the rare” case (even for PH), my PH being the result of lung compression due to deformity due to skeletal injury due to a heart surgery 30 years ago due to a heritable connective tissue disorder.

      After my last breakup you’ll have to give me a pretty long while to even think of starting up romance again. I have actually never told any girlfriend of mine that I’m going to be gone in 15-20 years because I have an intense fear the relationship would end immediately. My last one was almost perfect because she knew I had severe connective tissue and lung disease and didn’t mind… except, she abandoned me when her family protested her involvement with “lame people”.** If that didn’t happen I would have actually told her.

      **I wonder why she didn’t abandon her family (also “lame people”) at that point.

      • #16534
        Brittany Foster

        I’m so sorry to hear about how that relationship ended VK . I’m also glad that your family is coming around and starting to see just how serious all of this is. It’s hard when you don’t have something that would “normally” cause this condition. The doctors also find it difficult to put a number on a life span or how much “time” they estimate that we have. I really don’t think anyone can know that for sure unless someone is actively dying or not doing well and only has months or weeks left to live. Just hope for a better future with advances in science and advances in research for rare diseases like the ones you have. I believe that in 10 years science will change too! Keep the hope!

        • #16543

          Just hope for a better future with advances in science and advances in research for rare diseases like the ones you have.

          I always toe a fine line here, namely that I have to watch out to not take false hope (which can lead to me doing stupid things like wasting 5 years on a graduate degree). I know enough biology to understand what *won’t* be physically possible any time soon, although we can always hope for artificial lung implants!

        • #16550
          Brittany Foster

          I completely get what you’re saying here. I also struggle with the “optimism” but being “cautiously optimistic” as I like to call it. We can always “hope for the best” but we have to be realistic in our hopes or else we will just be setting ourselves up to be let down. Being let down or feeling disappointment is one of the hardest emotions for me to deal with.

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