What if?

What if I break a bone?

What if I cut myself while shaving?

What if my swelling gets worse and never goes back down again?

What if everyone stares at me when I wear stockings with shorts? Or a skirt?

And what if they’re thinking what a freak I am? What’s WRONG with that girl?

What if I’ll never be beautiful enough to find a mate?

What if I never find my soul mate because I was too afraid to let down my wall?

But what if I do let down my wall and my heart gets broken because the compression stockings and the night garment and the pump are just too much for him?

And then what if I do find a husband and get pregnant and my legs balloon up to an unmanageable state?

But what if I decide not to get pregnant out of fear and then lose out on the opportunity to bear my own child?

Or if I do have children and this is genetic, what if I pass it on to them? What will I tell my kids?

What if in the fight for awareness everyone I know (and those I never even met) knows I have lymphedema?

And what if in the fight for awareness I lose my identity and be branded as the “girl with that thing I can never remember the name of”? “That girl with lympha-something”?

What if they haven’t found a cure by the time I’m too old to put on my compression stockings on my own?

And what if they never find a cure in my lifetime and I really am stuck with this for the rest of my life?

What if I die before I get a chance to do everything I wanted to do?

But what if I die before I get a chance to do everything I wanted to do because I let my fears around my lymphedema hold me back?

What if I spend my life focusing on the what ifs? What happens then? What kind of life have I lived?

What if? What then…

What if my swelling does gets worse? Then I will use every tool in my toolbox to bring it back down.

What if I find the man of my dreams who loves me for me and accepts all that I am — lymphedema and all? Then I have found a man worthy of my love.

What if I successfully have children with no harm to me or them? And what if I do pass lymphedema along? Then I will teach my children to be proud of who they are and never let it hold them back.

What if in the fight for awareness I make lymphedema a proud part of my identity? Then I have learned to love all of me.

WHAT IF they never find a cure in my lifetime? Then I will die knowing that I made a difference in the lymphedema community and helped, in my own ways, advance the knowledge and treatment of lymphedema for generations to come.

I started writing this post down on “paper” several months ago, but I started writing these what ifs on my brain and on my heart many years ago. When I was diagnosed at age 13 with a condition that has no cure and so many unknowns, my worrying and projecting went on a rampage — a take-no-prisoners kind of rampage.

I got really good at playing the “what if” game. Like, really good. Like if worrying and projecting were a sport, I’d win an Olympic Gold Medal.

These what ifs have brought me to dark places, to places I never want to visit again. I was sad, I was angry, I was bitter. I was in the anger phase. No, I was not suicidal, but I was in a very low, very unhappy place in my life and my self-esteem. I spent a lot time really believing that the what ifs could come true. I let my what ifs and my fear of the unknown control me.

This post is not meant to be a pity party of 1. This is not a cry for help. I wrote this for everyone out there that has ever played the dangerous “what if” game, whether it be directly related to lymphedema or some other aspect of your life. I’ve written about some of my deepest, darkest fears that I’ve never shared with anyone else — I’ve shared them to let you know you’re not alone.

We have all played the “what if” game at least once or twice (or if you’re like me many, many more times than you can count), but what’s important is that you dig yourself out of the “what if” hole and see the light.

Don’t belittle your feelings. Embrace them. Accept them. And learn to move in a positive direction.

I know that is a million, bajillion times easier said than done.

I’m finally in a place in my life where I’ve come out on the other side. I’ve come to see the light, but I had to see the darkness first. I’ve come to ask myself, what if? Then what… And I’ve learned that it’s not as dark of a picture as I thought.


    • Tonya says:

      I’m still at a point where I used to be such a ppl person and socialized so much but now I only go out to dr appointments or grocery shopping when I have to. I was diagnosed right before finding out I’ve got non-alcoholic liver disease and this was autoimmune so once again nothing I did to cause it but still I live in my house and after diagnosis about 3 to 4 yrs ago now nothing has changed and I ask myself all the time will I ever find someone?? My man of 12 yrs cheated on me for a year and left with another woman and now has her prego and its all because of this stupid disease that distorts ur looks and body and makes u look like a monster I swear. This entire situation makes me wonder if now with no friends and no significant other, is this my life now? Is this all there is for me? Very scary thought. I’ll never be that upbeat person that says to myself and others that this is ok and I except it cause I don’t and doubtful I ever will and it’s as simple as that. Perhaps I’m being a big baby but I’ve lost more then I could ever recover because of this and I don’t want to ever see a mirror or swimsuit again in my life and that is a promise I will forever keep. Reasonable….. Probably not! Do I care….definitely not lol !!!
      Signed Tonya

      • Susan says:

        Dear Tonya, I feel your pain for it certainly has a terrible effect on us, this crippling, deforming condition…I’ve gone from a slim, attractive woman to a swollen, can hardly walk when feet are so bad and for sure I will never want to be in a swimsuit again! I suffer from fibromyalgia and chronic fatigue and everything is an effort most days, a big contrast from my life before but I know we cannot bury ourselves in it …we have to survive it! We are worth more than this! I know it doesn’t help when those, like your worthless husband, desert us but unfortunately no one can move us forward but ourselves. Thinking of you, Susan.

      • Susan says:

        Can’t thank you enough for taking the time to form this terriffic site , so well thought out and constructive; just knowing and learning about others’ experiences and sharing tips is invaluable. I just wish the PTs read sites like this, the real nitty gritty of what it’s like for us and yes, I feel many of them need to learn more and not put everyone in the same ‘box’. Thank you dear Grace. :)

    • GracefulLymphedema says:

      Willa, that’s so nice of you to say!! It’s taken me a long time to get to where I am now, so there’s always time for you :)

  1. Ellen says:

    Thank you so much for posting this–I needed to hear it and I hope to reach the same place you have reached in your acceptance.

  2. Eve Woods says:

    My best advice as someone living with severe lymphodema is deal with the bad stuff if it comes when it comes otherwise you worry and stress for no reason. Focus on what you can do and want to do. Put your energy into what you love and don’t ever let a bit of swelling on your body stop you from having an amazing smile on your face. People that have issues with your body have their own issues to contend with and its not your problem that they are superficial. There are millions of people in this world and just welcome the ones who are just as awesome as you into your life. There is only so many vacancies for true friends and loves so be picky and never settle for anything less than what you want and need. So what there are things you can’t do becauae there are so many things you can do and even more you have probably never tried that you might love to do. There is always a brighter path in life. Just walk the one that makes you feel good and doesn’t hurt anyone else. Cheers!! Eve

  3. Angela says:

    Really love this post! I’ve had lymphedema since I was 11 and I’m 44 now. I’ve had two children and it was challenging, but doable. I’ve often wondered what it will be like putting on compression garments when I’m 80 years old. Do you mind if I share your blog on Facebook? It does such a great job expressing things that many don’t realize. Thank you again for sharing. I’ve read it several times!

    • GracefulLymphedema says:

      Thank you Angela!! So glad you could relate to it. And yes, please do share away :) I also have a Facebook page — Graceful Lymphedema.

  4. Alexa Ercolano says:

    Love this—it speaks so honestly and truthfully. I’ve had many of these same “what-ifs” run through my own mind, and sometimes they can be truly debilitating. Putting these fears out there takes away some of their power. Thank you for writing this! Best :) xxox

  5. christine mills says:

    Hello new to community! From wilmington delaware looking for any information or help, thank you so much for posting and sharing information!

  6. marian says:

    my lymphedema started in 2003 but I was misdiagnosed I was treated for edema and by the time I found out it was lymphedema I was so swollen that I would panic at times but now I’m not in the dark any longer about my lymphedema and I just take one day at a time.

  7. Jnet says:

    Hi – I have lymphedema in my arm. Really not sure how I got it, no cancer. I did have an infection in my arm that caused cellulitis and that is what the dr believes set the lymphedema off. I do the what ifs every day. I worry consistently that this will give me cancer. I am not sure what the stats are on lymphedema giving you cancer such as soft tissue cancer from being constantly swollen. Once good thing is, my swelling is pretty under control. I do daily massages and that is about it. I only wear compression when I fly for longer then 3 hours. My question is to anyone out there, do you have the same fears about what this can cause? Is it rare to get cancer from lymphedema? I know infection is the number one risk that it can cause. But what about other things. Can someone live a long life with this chronic condition? Drs are very uninformed about this. I was actually told by my physical therapist I had this, not my Dr. Thanks for any input

    • GracefulLymphedema says:

      Hello! I don’t know anything about lymphedema causing cancer (only the reverse of cancer treatment causing lymphedema). And yes, doctors (and the whole medical community) are very uninformed when it comes to lymphedema and just the lymphatic system in general. There’s a lot to learn!

  8. Pad13 says:

    That was a beautiful post and I’m sitting here crying after reading it. You touched on a lot there!
    You are very gifted. It’s so kind of you to share your thoughts like this. I am giving you a virtual hug.
    ((((. )))).

    • GracefulLymphedema says:

      Thank you so much! I share my story in the hopes that it reaches someone else out there, to let you know you’re not alone :)

      • Anna says:

        Finally I read something so accurate about exactly how I feel. This is so me. Thank so much for opening up about your deepest fears and pain, it certainly takes alot of courage. I am lady aged 35 . I have been living with primary lympedema of both legs since I was 16. It has definitely been a roller coaster for me. The emotional pain has been enormous not to mention the pain of not being understood. I can relate to all these emotions. The what ifs , the low self eestem. Ever since my heart was broken at 25. I have never dated again, I would like to try again but I am still learning to be strong. Lympedema affected my career( had to change careers at the age of 26. I wake up with a heavy heart , I just pray to get past that feeling. I need to start living again. I have existed for far too long. I feel so empty on the inside . I am glad I have a job. finding pretty shoes
        etc. I wear pants not dresses. I admire your courage. I pray for peace everyday, It seems I have let lympedema overshadow my life. I am taking one step at a time. Have been extremely sad.

        Hugs. Thank you so much for sharing.

        • GracefulLymphedema says:

          Hugs right back to you!! It’s a struggle but you’re worth it! As I say in the post…it’s about finding someone worthy of your love :)

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