Learning to Let Go of the Past and Live With Scleroderma


There​ ​are​ ​days​ ​that​ ​I​ ​can​ ​breeze​ ​through​ ​life.​ ​Days​ ​when​ ​everything​ ​comes​ ​so​ ​easily –​ ​no fuss,​ ​no​ ​muss,​ ​no​ ​pain,​ ​no​ ​fatigue.​ ​Those​ ​kind​s ​of​ ​days​ ​give​ ​me​ ​hope​ ​for​ ​the​ ​future​ ​and​ ​hope that​ ​maybe​ ​living​ ​with​ ​systemic​ ​scleroderma​ ​can​ ​be​ ​manageable​ ​and​ ​ ​won’t​ ​always​ ​be​ ​so hard.​ ​

I​ ​have​ ​been​ ​living​ ​with​ ​a​ ​rare​ ​chronic​ ​illness​ ​called​ ​systemic​ ​scleroderma​ ​since​ ​my 19th​ ​birthday​ ​16​ ​years​ ​ago.​ ​Living​ ​with​ ​this​ ​disease​ ​has​ ​not​ ​always​ ​been​ ​easy,​ ​nor​ ​has​ ​it been​ ​consistent.​ ​Systemic​ ​scleroderma​ ​is​ ​an​ ​autoimmune​ ​disease​ ​that​ ​causes​ ​an overproduction​ ​of​ ​collagen​ ​in​ ​the​ ​body.​ ​​It​ ​also​ ​causes​ ​the​ ​body​ ​to​ ​fight​ ​against​ ​itself, causing​ ​damage​ ​to​ ​the​ ​inside​ ​of​ ​the​ ​body​ ​(heart,​ ​lungs,​ ​GI​ ​,​ ​kidneys,​ ​blood​ ​vessels ​and liver)​ ​and​ ​causes​ ​the​ ​outside​ ​of​ ​the​ ​body​, ​mainly​ ​the​ ​skin,​ ​to​ ​become​ ​stiff,​ ​hard​ ​and constricted.​ ​As​ ​you​ ​can​ ​probably​ ​assume,​ ​it’s​ ​not​ ​always​ ​“a​ ​beautiful​ ​day​ ​in​ ​my neighborhood”​ ​having​ ​to​ ​live​ ​my​ ​life​ ​with​ ​a​ ​body​ ​that​ ​has​ ​a​ ​complete​ ​mind​ ​of​ ​its​ ​own​ ​and doesn’t​ ​always​ ​play​ ​fair.​ ​

When​ ​I​ ​was​ ​first​ ​diagnosed​ ​I​ ​knew​ ​nothing​ ​about​ ​what scleroderma​ ​was​ ​or​ ​what​ ​symptoms​ ​were​ ​common.​ ​​Back​ ​then​ ​there​ ​was​ ​not​ ​a​ ​ton​ ​of educational​ ​information​ ​about​ ​scleroderma​ ​at​ ​all!​ ​The​ ​only​ ​information​ ​​ ​I​ ​could​ ​find was​ ​that​ ​it​ ​was​ ​a​ ​rare​ ​disease​ ​that​ ​affects​ ​mostly​ ​women​ ​ages​ ​45​ ​and​ ​up.​ ​It​ ​was​ ​a disease​ ​with​ ​no​ ​origin​ ​and​ ​no​ ​cure,​ ​and​ ​the​ ​life​ ​expectancy​ ​was 10​ ​years​ ​after​ ​diagnosis. Which​ ​meant​ ​it​ ​was​ ​a​ ​fatal​ ​disease.​ ​When​ ​I​ ​think​ ​back​ ​to​ ​the​ ​original​ ​shock​ ​ ​I ​felt when​ ​I​ ​read​ ​that​ ​not​ ​only​ ​was​ ​the​ ​disease​ ​I​ ​had​ ​been​ ​diagnosed​ ​with​ ​incurable​ ​but​ ​also fatal,​ ​it​ ​still​ ​leaves​ ​a​ ​hollow​ ​pit​ ​in​ ​the​ ​bottom​ ​of​ ​my​ ​stomach.​ ​

That​ ​was​ ​a​ ​hard pill​ ​to swallow​ ​at​ ​the​ ​young​ ​age​ ​of​ ​only​ ​19.​ ​My​ ​life​ ​had​ ​just​ ​started.​ ​I​ ​was​ ​only​ ​in​ ​my​ ​second semester​ ​of​ ​college,​ ​for​ ​pete’s​ ​sake.​ ​I​ ​felt​ ​some​ ​reassurance​ ​when​ ​I​ ​found​ ​UPMC​ ​(University​ ​of​ ​Pittsburgh​ ​Medical​ ​Center) ​shortly​ ​after​ ​being​ ​diagnosed.​ ​This​ ​center​ ​was the​ ​top​ ​scleroderma​ ​clinic​ ​in​ ​the​ ​country.​ ​When​ ​I​ ​went​ ​for​ ​my​ ​original​ ​consultation there​, I​ ​was​ ​in​ ​awe​ ​at​ ​how​ ​informed​ ​and​ ​knowledgeable​ ​not​ ​just​ ​the​ ​specialists​ ​were,​ ​but the​ ​entire​ ​medical​ ​staff​, ​including​ ​the​ ​medical​ ​assistants ​and​ ​the​ ​front​ ​office​ ​staff.​ ​They knew​ ​so​ ​many​ ​things,​ ​my​ ​brain​ ​was​ ​in​ ​information​ ​overload​ ​at​ ​all​ ​of​ ​the​ ​new​ ​information and​ ​tips​ ​I​ ​learned​ ​from​ ​just​ ​visiting​ ​the​ ​center​ ​for​ ​only​ ​one​ ​day!​ ​I​ ​left​ ​there​ ​two​ ​days later​ ​feeling​ ​better​ ​about​ ​my​ ​outcome​ ​living​ ​with​ ​scleroderma​ ​and​ ​like​ ​I was​ ​more​ ​educated and​ ​prepared​ ​for​ ​the​ ​long​ ​journey​ ​ ​I​ ​knew​ ​was​ ​to​ ​come​ ​battling​ ​this​ ​disease.

However,​ ​just​ ​because​ ​I​ ​​was​ ​more​ ​knowledgeable​ ​about​ ​what​ ​it​ ​was​ ​to​ ​have​ ​scleroderma did​ ​not​ ​mean​ ​I​ ​was​ ​actually​ ​prepared​ ​for​ ​all​ ​of​ ​the​ ​changes​ ​that​ ​were​ ​occurring​ ​to​ ​not just​ ​my​ ​body​ ​but​ ​my​ ​emotions,​ ​my​ ​self​-​confidence​ ​and​ ​my​ ​outlook​ ​on​ ​my​ ​life​ ​in​ ​general.​ ​​It took​ ​me​ ​a​ ​long​ ​time​ ​to​ ​come​ ​to​ ​terms​ ​with​ ​the​ ​fact​ ​that​ ​​​living​ ​with​ ​scleroderma​ ​​comes with​ ​a​ ​lot​ ​of​ ​baggage.​ ​Doctor​ ​appointments​ ​two​ ​to​ ​three​ ​times​ ​a​ ​week,​ ​tests,​ ​blood work, surgical​ ​procedures…​ ​and​ ​that​ ​was​ ​just​ ​a​ ​taste​ ​of​ ​what​ ​I​ ​had​ ​to​ ​go​ ​through​ ​to​ ​stay​ ​on​ ​top of​ ​this​ ​disease​ ​and​ ​make​ ​sure​ ​I​ ​was​ ​doing​ ​everything​ ​possible​ ​to​ ​keep​ ​my​ ​body​ ​as​ ​healthy as​ ​I​ ​could.​ ​The​ ​“struggle​ ​was​ ​definitely​ ​real,”​ ​and​ ​those​ ​weren’t​ ​the​ ​only​ ​things​ ​I had​ ​to deal​ ​with.​ ​I​ ​also​ ​had​ ​to​ ​process​ ​the​ ​reality​ ​of​ ​having​ ​to​ ​let​ ​go​ ​of​ ​things​ ​in​ ​my​ ​life​ ​that were​ ​really​ ​important​ ​to​ ​me​ ​and​ ​I​ ​really​ ​did​ ​not​ ​have​ ​a​ ​say​ ​in​ ​the​ ​decision​ -making process.

Scleroderma​ ​made​ ​those​ ​decisions​ ​for​ ​me​ ​and​ ​it​ ​was​ ​not​ ​an​ ​easy​ ​thing​ ​to​ ​have​ ​to​ ​let go​ ​of​ ​goals​ ​that​ ​were​ ​extremely​ ​important​ ​to​ ​me. For​ ​example​, ​my​ ​job​ ​ ​was​ ​a big​ ​part​ ​of​ ​who​ ​I was​ ​at​ ​that​ ​time​ ​of​ ​my​ ​life.​ ​I​ ​was​ ​23​ ​years​ ​old​ ​and​ ​I​ ​had​ ​to​ ​give​ ​up having​ ​a​ ​career​ ​and​ ​the​ ​ability​ ​to​ ​advance​ ​in​ ​my​ ​position​ ​and​ ​make​ ​my​ ​own​ ​living​ ​and​ ​if that​ ​wasn’t​ ​crushing​ ​in​ ​itself​ ​I​ ​also​ ​had​ ​to​ ​give​ ​up​ ​school​ ​and​ ​my​ ​goal​ ​to​ ​get​ ​an​ ​education and​ ​become​ ​a​ ​registered​ ​nurse​. Those​ ​two​ ​things​ ​back​ ​to​ ​back​ ​were​ ​devastating​ ​to​ ​me​ ​and life​ ​after​ ​that​ ​was​ ​hard​ ​to​ ​bear.​ ​“Who​ ​was​ ​I​ ​supposed​ ​to​ ​be​ ​without​ ​a​ ​job​ ​or​ ​an education?”​ ​​​“How​ ​was​ ​I​ ​going​ ​to​ ​support​ ​myself​ ​and​ ​pay​ ​my​ ​bills​ ​without​ ​any​ ​form​ ​of income?”​ ​As​ ​it​ ​was​ ​I​ ​had​ ​over​ ​$200​ ​extra​ ​a​ ​month​ ​added​ ​on​ ​to​ ​my​ ​monthly​ ​income​ ​just​ ​in medical​ ​bills​ ​and​ ​prescriptions.​ ​“​How​ ​was​ ​I​ ​going​ ​to​ ​survive?”

Finding​ ​myself​ ​and​ ​learning​ ​how​ ​to​ ​pick​ ​up​ ​the​ ​pieces​ ​of​ ​my​ ​broken​ ​existence​ ​was​ ​not​ ​an easy​ ​feat.​ ​It​ ​took​ ​me​ ​something​ ​like​ ​five to six ​years​ ​to​ ​come​ ​to​ ​terms​ ​with​ ​my​ ​life​ ​after scleroderma​ ​and​ ​that​ ​all​ ​of​ ​my​ ​dreams​ ​and​ ​goals​​ ​I​ ​once​ ​had​ ​set​ ​out​ ​for​ ​myself​ ​were not​ ​to​ ​be.​ ​During​ ​that​ ​time​ ​it​ ​was​ ​more​ ​important​ ​for​ ​me​ ​to​ ​stay​ ​healthy​ ​and​ ​alive​ ​than it​ ​was​ ​to​ ​figure​ ​out​ ​what​ ​my​ ​goals​ ​were​ ​for​ ​the​ ​future.​ ​That​ ​time​ ​period​ ​of​ ​my​ ​life​ ​was hard​ ​for​ ​me​ ​health​wise.​ ​I​ ​was​ ​having​ ​a​ ​lot​ ​of​ ​physical​ ​problems,​ ​especially​ ​with​ ​my breathing​ ​and​ ​my​ ​skin​ ​and​ ​I​ ​was​ ​in​ ​and​ ​out​ ​of​ ​the​ ​doctor’s ​office​ ​daily​ ​and​ ​had​ ​test​ ​after test​ ​and​ ​more​ ​surgical​ ​procedures​ ​than​ ​I​ ​could​ ​even​ ​count.​ ​If​ ​I​ ​did​ ​not​ ​have​ ​the​ ​love​ ​and constant​ ​support​ ​from​ ​my​ ​parents​ ​and​ ​my​ ​sibling,​ ​I​ ​don’t​ ​know​ ​if​ ​I​ ​would​ ​have​ ​had​ ​such​ ​a positive​ ​attitude​ ​about​ ​everything​​ ​I​ ​was​ ​going​ ​through,​ ​but​ ​eventually​ ​I​ ​got​ ​through it​ ​and​ ​my​ ​disease​ ​started​ ​to​ ​settle​ ​down​ ​and​ ​I​ ​was​ ​able​ ​to​ ​focus​ ​on​ ​my​ ​life​ ​and​ ​the​ ​things I​ ​wanted​ ​for​ ​myself​ ​and​ ​the​ ​steps​ ​I​ ​needed​ ​to​ ​take​ ​to​ ​get​ ​there.

three people standing together and smiling

Scleroderma​ ​is​ ​not​ ​a​ ​disease​ ​ ​you​ ​can​ ​ever​ ​get​ ​a​ ​grasp​ ​on​ ​and​ ​be​ ​in​ ​control​ ​of​ ​the outcomes​ ​on ​your​ ​body​ ​or​ ​your​ ​health.​ ​It​ ​is​ ​a​ ​roller​ ​coaster​ ​of​ ​ups​ ​and​ ​downs​ ​and​ ​for​ ​me​ ​it never​ ​seems​ ​to​ ​cut​ ​me​ ​any​ ​slack.​ ​But​ ​I​ ​wasn’t​ ​going​ ​to​ ​let​ ​this​ ​disease​ ​control​ ​me​ ​or​ ​the​ ​way​ ​I​ ​wanted​ ​to​ ​live​ ​my​ ​life any longer.​ ​So​ ​I​ ​decided​ ​to​ ​stop​ ​trying​ ​to​ ​control​ ​my​ ​disease and​ ​start​ ​living​ ​the​ ​life​​ ​I​ ​was​ ​given​ ​and​ ​​​allowing​ ​myself​ ​to​ ​make​ ​memories​ ​and​ ​have fun. Even​ ​though​ ​there​ ​are​ ​a​ ​lot​ ​of​ ​things​ ​I​ ​can’t ​do​ ​like​ ​go​ ​ice​ ​skating,​ ​or​ ​scuba​ ​diving, or​ ​rock​ ​climbing, there​ ​are​ ​so​ ​many​ ​other​ ​things​​ ​I​ ​can​ ​achieve​ ​and​ ​so​ ​many​ ​places​ ​in the​ ​world​ ​I​ ​want​ ​to​ ​see.

With​ ​that​ ​thought​, ​I​ ​started​ ​a​ ​bucket​ ​list​ ​of​ ​all​​ ​the​ ​things I​ ​wanted​ ​to​ ​accomplish​ ​in​ ​my​ ​lifetime.​ ​It​ ​wasn’t​ ​like​ ​your​ ​typical​ ​bucket​ ​list​ ​filled​ ​with amazing​ ​vacation​ ​spots​ ​and​ ​adventures​ ​and​ ​once​ ​in​ ​a​ ​lifetime​ ​experiences​​ ​you​ ​want to​ ​fulfill​​.​ ​My​ ​list​ ​was​ ​more​ ​of​ ​a​ ​list​ ​of​ ​goals​ I​ ​wanted​ ​to​ ​accomplish​ ​for​ ​myself​​.​ ​Some​ ​were small​, ​like​ ​complete​ ​a​ ​5K​ ​or​ ​give​ ​a​ ​speech​ ​to​ ​the​ ​patients​ ​at​ ​the​ ​National​ ​Conference.​ ​I also​ ​included​ ​some​ ​bigger​ ​goals​ ​like​ being ​a​ ​board​ ​member​ ​of​ ​the​ ​Scleroderma​ ​Tri​ -State Chapter​ ​and​ ​to​ ​have​ ​an​ ​article​ ​be​ ​published​ ​in​ ​the​ ​New​ ​York​ ​Times.​ ​

It​ ​didn’t​ ​take​ ​long​ ​to fill​ ​up​ ​my​ ​paper​ ​with​ ​about​ ​75​ ​goals​ ​​I ​wanted​ ​to​ ​achieve​ ​in​ ​my​ ​lifetime​, but​ ​now​ that ​I​ ​had given​ ​myself​ ​a​ ​purpose,​​ ​it​ ​still​ ​wasn’t​ ​enough​ ​for​ ​me.​ ​I​ ​needed​ ​to​ ​give​ ​back​, ​I needed​ ​to​ ​try​ ​to​ ​help​ ​others​ ​like​ ​me​ ​who​ ​were​ ​out​ ​there​ ​in​ ​this​ ​world​ ​living​ ​with scleroderma​ ​and​ ​didn’t​ ​have​ ​the​ ​first​ ​clue​ ​about​ ​what​ ​it​ ​was​ ​or​ ​how​ ​to​ ​get​ ​treatment.​ ​I knew​ ​from​ ​my​ ​personal​ ​experiences​ ​and​ ​all​ ​of​ ​the​ ​hardships​ ​I​ ​endured​ ​I​ ​could​ ​relate​ ​to others,​ ​especially​ ​younger​ ​patients​ ​who​ ​were ​having​ ​a​ ​hard​ ​time​ ​living​ ​with​ ​this​ ​disease​ ​and struggling​ ​to​ ​come​ ​to​ ​terms​ ​with​ ​all​ ​of​ ​the​ ​sacrifices​ ​scleroderma​ ​demands​ ​from​ ​you.

So​ ​I​ ​started​ ​my​ ​online​ ​support​ ​group​, ​the​ ​Scleroderma​ ​Super​ ​Starz​, with a little help from the Scleroderma Tri-State Chapter, ​and​ ​it​ ​just​ ​took​ ​off! Only​ ​six ​months​ ​later​ ​I​ ​had ​almost​ ​2000​ ​members​ ​nationally​ ​and​ ​internationally.​ ​It was amazing​. ​I​ ​am​ ​so​ ​proud​ ​of​ ​all​​ ​my​ ​members​ ​for​ ​trusting​ ​me​ ​with​ ​their​ ​stories​ ​and deciding​ ​to​ ​join​ ​and​ ​not​ ​being​ ​afraid​ ​to​ ​ask​ ​for​ ​help!​ ​It​ ​took​ ​me​ ​a​ ​long​ ​time​ ​to​ ​reach​ ​out to​ ​fellow​ ​patients​ ​and​ ​I​ ​am​ ​so​ ​honored​ ​at​ ​my​ ​Super​ ​Starz​, ​some​ ​of​ ​whom​ ​are​ ​newly diagnosed​ ​and​ ​already​ ​reaching​ ​out​ ​for​ ​help!​ ​That​ ​makes​ ​me​ ​so​ ​happy.​ ​

Without​ ​the​ ​group I​ ​don’t​ ​know​ ​if​ ​I​ ​could​ ​say​​ ​I​ ​am​ ​happy​ ​at​ ​this​ ​point​ ​and​ ​time​ ​in​ ​my​ ​life​ ​and​ ​I​ ​am excited​ ​for​ ​the​ ​future​ ​and​ ​the​ ​opportunities​ ​to​ ​come.​ ​Being​ ​an​ ​advocate​ ​is​ now​ ​my career​ ​and​ ​my​ ​purpose​ ​in​ ​life​.​ ​Even​ ​though​ ​it’s​ ​not​ ​a​ ​paying​ ​job,​ ​it’s​ ​definitely something​ ​I​ ​take​ ​pride​ ​in​ ​and​ ​something​ ​I ​will​ ​continue​ ​to​ ​do​ ​as​ ​long​ ​as​ ​I​ ​am​ ​able​ ​to​ ​do so!

I​ ​am​ ​not​ ​going​ ​to​ ​ever​ ​sugar​coat​ ​things;​ ​living​ ​with​ ​scleroderma​ ​is​ ​definitely​ ​hard​ ​and overwhelming​ ​and​ ​at​ ​times​ ​unbearable,​ ​but​ ​I​ ​will​ ​never​ ​give​ ​up​ ​on​ ​myself​ ​or​ ​my scleroderma​ ​family.​ ​Even​ ​at​ ​times​ ​when​ ​I​ ​am​ ​at​ ​my​ ​lowest​ ​and​ ​everything​ ​seems​ ​too​ ​hard and​ ​I​ ​feel​ ​not​ ​strong​ ​enough​ ​to​ ​get​ ​through – ​and​ ​believe​ ​me,​ ​there​ ​are​ ​times​ ​like​ ​that – ​I have​ ​learned​ ​that​ ​by focusing​ ​less​ ​on​ ​the​ ​things​ ​I​ ​can​not​ ​control​ ​and​​​ ​more​ ​on​ ​the​ ​things​ ​I can​ ​control​, ​like​ ​my​ ​attitude​ ​and​ ​taking my pills and going to all of my doctors appointments and ​knowing​ ​when​ ​to​ ​lean​ ​on​ ​my​ ​support​ ​system​, ​I​ ​can​ ​get through​ ​anything​ ​if​ ​I​ ​just​ ​set​ ​my​ ​mind​ ​to​ ​it.​ ​

two women holding a boy on his first birthday

That​ ​is​ ​what​ ​I​ ​intend​ ​to​ ​show​ ​others​ ​living with​ ​scleroderma​ – ​that​ ​yes!​ ​It​ ​is​ ​hard,​ ​and​ ​yes!​ ​Sometimes​ ​you​ ​might​ ​feel​ ​like​ ​you​ ​want​ ​to call​ ​it​ ​quits​, ​but​ ​there​ ​is​ ​always​ ​a​ ​way​ ​to​ ​push​ ​forward​ ​and​ ​there​ ​are so many ​things​ ​in​ ​life​ ​worth fighting​ ​for​ ​and​ ​your​ ​life​ ​is​ ​one​ ​of​ ​the​ ​most​ ​important​ ​things​ ​on​ ​that​ list!!

Scleroderma is a rare chronic disease I was diagnosed with 16 years ago and it has totally and completely changed my entire life. Some ways for the good and some ways for the not so good, but nonetheless, my life is forever changed and it took me some time to adjust to all of the changes that scleroderma had made to my health and to me emotionally and spiritually. But I made it through and even though my life may not be everything I envisioned, it is my life and it is precious and amazing and mine!

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