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Posted on 16. February 2012

Chronic Illness Before the Diagnosis: You're Not Crazy. Trust Yourself.

By Dr. Elvira G. Aletta

I read somewhere that properly diagnosing chronic illness can take from two to three years. Many of you wait even longer.

In the meantime, while the doctors scratch their heads, we’re expected to be happy we’re alive. And that’s if they don’t write us off with: “It’s psychological.”

It took a year and three doctors before I was diagnosed with scleroderma. Just remembering what I went through during that year-from-hell gets my blood boiling, and I was one of the lucky ones.

If you are experiencing symptoms but don’t have a diagnosis yet, here are some tips that I hope will help you get through this trying time a little easier.

Trust yourself. You are not crazy. Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to do for their patients. ALL of them eventually received a medical diagnosis. That’s right: ALL OF THEM.

Maybe I see a skewed sample of the general population, but I don’t think so. Medicine is slowly catching up to the experience of hundreds of thousands of people reporting symptoms for which there is no hard, “objective” test. They should be believed. Even the Veterans Administration has come to recognize that when a combat veteran says he is suffering from Post Traumatic Stress Syndrome, he is not faking. We do not want to be sick, and it just pours salt in the wound when anyone suggests we are making this stuff up.

Learn who you can confide in and who it’s best not to. Your loved ones may be among those who have doubts, especially if you don’t look sick. They may not understand that there is a huge amount the science side of medicine needs time to deal with or just doesn’t know.

Many chronic illnesses develop slowly, and the symptoms overlap. There are few “hard, objective” diagnostic tests that rule out or rule in a particular disease. Your family and friends may be frustrated and confused. Before your struggle, they thought doctors knew everything and, like Gregory House (the title character in the television medical drama House), could have you diagnosed and treated within the time it takes to microwave popcorn. When given a choice of trusting the doctor or trusting you, you might lose out.

For those who are open to it, you can try educating them about this process. To those who aren’t, avoid them like kryptonite. They will suck away your precious energy.

But I’m getting side-tracked. My point is that even when those around you are questioning the reality of your symptoms, trust yourself first.

If anyone - friend, foe or doctor - tells you any variation of “It’s all in your head,” please, resist the urge to spit in their eye. On the other hand, I’m telling you that getting angry and defensive on your behalf is better than doubting yourself and becoming depressed. Just regulate your anger so that you don’t alienate the very people you need. Do that by being direct, controlled and civil when you say, “That makes me angry.” Then let it go.

When your doctor tells you to go to a psychotherapist, don’t throw the baby out with the bathwater. Some doctors will refer you to a psychologist because they truly believe it would benefit you to talk to a professional who can help you cope as they try to figure out what is going on medically. That is great. Take the referral, and try it out.

On the other hand, many doctors will tell you to see a shrink because they don’t know what else to do with you. It could be that your anxiety, depression and anger makes them uncomfortable. Sad but true. That doesn’t devalue the benefit of a good therapist. Take the referral, or find your own. You may discover it is actually a relief to talk to a good therapist, and there could be other benefits.

Finally, as hard as it is, nurture yourself. As a chronic illness patient you will be telling your story to a million people, a million times. You will visit a gaggle of doctors, nurses, lab technicians, receptionists, offices and hospitals. You will fill out reams of forms, give up quarts of blood and pee, be poked and prodded, dress and undress a thousand times. It is exhausting. Stop long enough to replenish yourself body and soul. If you pray, pray. If you meditate, meditate. Laugh! Give yourself a pity party for 20 minutes (no longer), complete with chocolate! If you have just one person, place or thing that eases you back to your peaceful place, be grateful and spend time with them.

Above all, listen to your gut.

This blog is reposted with permission from www.explorewhatsnext.com.

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Comments (14) -

Theresa Johnson
4:44 AM on Friday, February 17, 2012

Wonderfully written and great advice!

Betty
5:37 AM on Friday, February 17, 2012

Thank you for this blog. TRUST AND NURTURE_ wonderful words of advice

I was 57 when finally diagnosed CVID  and my Mom had been arguing with MD's since I was 4 yrs old--- and had double pneumonia and then it continued until i was so ill I could not work.

It wasmy MOm's determination that finally got me to a diagnosis. She trusted thatthere was something missing in me and she  was right.

I never gave up trying to find the reason I was so sick because she was so sure I had a disease.
Shortly after her deatha t 93 I was finally diagnosed. Correctly.

I particularly empathize with
" see the psychotherapists"- More  than once I have heard that - and not only for CVID-

I had pre cancer of cervix in my thirties along with chronic bronchitis  and was in so much pain and heard ricuculous things like boyfriend issues, or I need a hobby.

How can we get the word out more on this  disease??. It bothers me that we do not see more ads from pharamceutical companies on what treatments are available.

And we need more ads on all the forms of PIDD. I would love to see a Hollywood person come out and say I have this in my family- we need to do this-
Many people continue to be misdiagnosed and suffer needlessly.

susan watkins
8:24 AM on Friday, February 17, 2012

Hear, hear.  Indeed you are one of the lucky ones.  Just imagine at any point how many people are out there trudging around still looking for answers.

I must take issue with you on one suggestion and that is to go ahead and see the shrink.  I did that as well even knowing that I did not need to see a shrink.  2 shrinks to be exact, both of whom diagnosed me with Bi=Polar.  I protested.  'Why am I practically sixty years old and this has never come up?'.  Neither of them had an answer and just bull dozed forward with their diagnosis.  I spent thousands of dollars for nothing.  I kept asking, 'are you sure that bi-polar makes you so sick like this', same answer again and again, 'yes'.  Finally after 6 years of suffering and searching I made it back to my internist and literally begged for help.  There must be something you missed, look at me, I am skin and bones and suffering so'.  PLEASE help me before I die.

Well she finally thought to check my immune levels and, NewsFlash',  here it is.  Now several years later, many autoimmune diseases later, thousands and thousands of dollars later, I would still like to go back and beat the tar out of a few of the rude and dismissive doctors, but especially the shrink.  She even went as far as giving me Lithium!! but mostly she just ignored me and stayed the course on her diagnosis and treatment plan.  Treatment plan with no flexibility or openess to possible mistakes and rethinking things.  Her plan was to make money big time.  At one point I was so anxiety riddled, I called her office to try to see her sooner than my next appointment.  I was really on the edge.  Her advice, calm down and up your dose of horse tranquilers.  Just that 4 minute phone call was billed to me.  75 dollars for her time to talk on the phone and give her 'expert' opinion.

Okay I realize that I am getting carried away and my blood pressure is headed up.  Only you know if you really need a shrink or if it might help you... but beware of getting caught up in a shake down. Once I finally began to get my real diagnoses, I was looking forward to revisiting the doctors who dismissed me as some hysterical old woman or in the case of the shrink, someone who not only robbed me of money but felt free to rob my soul.  I was so vulnerable at that time and so physically sick yet she kept telling my 'in your head, in your head', I would love to go back to her office and punch her right in the nose.  Oh well, I will probably be edited for potential agressiveness, but it just might be worth it...

Aarin
11:18 AM on Monday, October 22, 2012

Faith, belief in the absence of proof, in ones self has waxed and waned in the 17 years 12 doctors, countless bills, scans and fake smiles from the medical comunity which on paper mean yeah we think your just nutsSmile until i finally have my first confirmed Dx. I can relate. And yes I am going to fax my genetic tests results which cannot be misconstrued to all of my docs who gave me a label of 'sensitive', 'hypochondriac', 'pyscosomatic' in order to say; "Here stick this up your hypochondriac, you didn't know you had one of those did you? I'm glad I could make you aware of a new part of you anatomy!!! Have a nice day"
    To have faith in yourself regardless of the responce, in the abcence of mental illness of course, is a key to peace of mind but a Dx helps- it just may take longer than many can hold out for. Best of luck to all of you who are in the land of limbo. And remember fresh eyes on a problem just may lead to the solution, it did in my case. Take care.

vicky
7:09 AM on Friday, December 20, 2013

after my current year of diagnosis hell and finally getting bloodwork that at the very least proves I have CVID, I am far from done.  My sinuses continue to plague me. After seeing a mountain of docs who also have insinuated my sanity is in question, I am as frustrated as all of you are. My extreme pain over my entire body, sinus headaches, CNS issues, new problems with my heart and BP that are documented, seem to not resonate. I am going to see a new expert ENT in NY who does a 3 hour initial visit. Then he runs tests.  this is the type of doc we all we need with a complex illness.  Don't let anyone put you down or make you doubt for one minute what you are feeling isn't real. and yes, I too have wanted to punch a few of them for some extremely rude remarks.  Remember, just because they are docs does not make them gods.  Do your own research and keep asking questions.  Find a physician who will be your partner, not your parent.  And for all of us....lets hang tough and keep fighting for wellness.  

Kim
2:19 PM on Friday, April 11, 2014

It's bad when you go to your therapist for years and you tell her your Docs are telling you disability and she thinks you need to keep on working. It is like she doesn't believe there is something physical wrong with you. I never discussed much about my physical issues with her and when I did she just seemed like it wasn't a big deal. She was not in my shoes when I had to drag myself to work and felt like my legs were not going to carry me.it is hard to go back to her when she just seemed to brush it off but I have been going to her for anxiety since I was 29 and I am 52 now.

vicky
5:26 PM on Friday, April 11, 2014

its worse when you are in so much epic chronic pain, you debate killing yourself.  and the docs dole out pain meds like you are a crack smoking junkie.  when you need the meds just to stand up and try to function on the most modest of levels.  its worse when no-one knows why you are sick for over a year and half with multiple hosp visits, IVIG infusions,Picc line, sores everywhere and sudden heart problems.  with an 18 lb weight loss.  Nope, not cancer.  so what the hell is it then?  frankly.. what is the most bad of all is...its april now. I wrote my last note in December.  and it got so much worse. I am not a religious person, but if anyone would care to pray for me, I will take it.  

Kim
1:47 PM on Monday, April 14, 2014

I will pray for you Vicky!  I wasn't diagnosed until I was 50 and I have been to Doctors all my life and they tell me that this is genetic. Hang in there Vicky and I am going to be praying that God will open doors for you and lead you to the right Doctor and give them knowledge on how they can help you. It is very frustrating knowing for years something is just not right with you and a relief  when finally being diagnosed. I just praise God for the ENT that discovered my cvid.

vicky
1:25 PM on Friday, May 16, 2014

well, it appears its chronic lyme disease, which caused my immune system to crash and brought with it a ton of other co-infections.  Now in addition to my ton of daily vitamins, supplements, pressed juice, infrared sauna I am back on doxy and heading for hyperbaric oxygen.  Do not want to end up in a wheelchair.  If anyone else turned out to have had lyme with CVID, I would be interested in hearing back.

Susan
4:26 PM on Friday, July 11, 2014

   Vicky,    Hello there.  I'm writing back because I have
   chronic Lyme and was recently diagnosed with CIVD.  This was
    about 4 months ago.  I have not yet begun treatment for it,
    but I will soon.  
             I had to nod and smile when I read, vitamins,
             supplements,
       pressed juice,  infrared sauna.   I've cut back a bit on
     the saunas but I'm doing the other things still after 7
      years.   Everything keeps me going.  
             Have you been receiving IVIG treatments?  
             For me,  I think I may've had this syndrome first, and
         then the Lyme and fatigue came later.  Just a thought.  
         Don't know for sure.  Either way,  they all seem to
          overlap.
               Hope you're doing well as possible .  Would be
          nice to hear back if you visit this site.  good wishes.  

Susan
4:36 PM on Friday, July 11, 2014

    I would like to add,  that I did like the article by
   Dr. Aletta.  As to the other comments,  I can relate to what
   is being said.  I was dismissed by various doctors along the
    way.   I was told by one to 'seek counselling' when I had
    signs of depression.  A good thyroid diagnosis helped with this.
          I did seek counselling actually and find it invaluable
     I was dealing with some family and relationship issues
      and it has helped me sort them out.  Now, with the
       challenges which this illness presents,  one of them
       being a feeling of isolation and/or not fitting into any
        real 'definable category' that people have any idea
           what you're talking about,  well,  it does help me
           with that as well.  Just sending 'my best' to
        everyone because sharing via this site is important.
               I'm not saying therapy is for everyone.  Just
          that it has helped me.  
          

Kay
12:59 PM on Saturday, July 12, 2014

All I can say is wow!   It may sounds weird, but it is good to come across people that know what you are experiencing too... Not that I would wish this on anyone!!  I was diagnosed with CVID last October by my pulmonary dr.  Thank the good Lord for that.  I really think I should send him a thank you note for checking my IgG levels, after him being suspicious of me possibly having an immune deficiency.
At the time, I thought most of my illness was brought on by stress and aches/pain from fibromyalgia.  Of course, bad stress is not good for anyone, and it has been on-going for too long.
At the beginning, I was in denial.  I didn't want any more illness... I also have RA, chronic bronchitis, CFS and I noticed I tired out quickly, to the point of exhaustion at mid-day.  Oh and horrible migraines!
In Januaury of this year, I began to feel pain all over my body.  The Cymbalta I have been on for years no longer controlled my pain.  I could not tolerate Lyrica, as I would "pack on" pounds like crazy!  I came to the conclusion, that I needed to take the pain medication that my rheumatologist had prescribed months earlier.  
Today, I make myself get up and get moving, and look for something good to focus on.  On days when I have less energy and more pain, I give myself time to rest.
One very awesome thing I have noticed, is that with the multiple supplements I have been on, and IVIG therapy, I have not been having as many migraines.  Hallelujah for that!!
Thank you for allowing me to share.  This is still a new adjustment for me, and I don't know anyone with a PPID illness, so it can be very lonely.
Take care and God bless!
Kay

Gary Shaner
8:16 PM on Thursday, June 29, 2017

I have just been diagnosed with CIDP .what a game changer.I have had 5 treatments, I seem to be stronger probably cant function with out treatments.now in pt rehab came to Denver  unable to walk anybody out there?

Hally DeR
4:55 PM on Friday, July 07, 2017

Hello Gary,   I see most of the posts are from 3 years ago.   In any case,  I will say that you are not the only one.   I have this as well.    I did do subQ which are treatments at home for 6 months.   Since I didn't notice much of a difference    I stopped doing them.   It's good that they are helping you.   There are people I've talked with and they felt better also having IVIG.    Since this site isn't getting much activity you may wish to try the site,  'Daily Strength'.    There is a CVID group on there and when I joined it,  there was a lot more sharing going on.   People would also answer other peoples' questions.  I'm very glad to hear you went to Denver and are getting help.   I have lived with this for many years.   Just hang in there,  it sounds like you are getting the care which need.

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