5 posts tagged “openness about diagnosis”

Parenting with bipolar II: Alysia’s story

Posted June 15th, 2018 by

Meet Alysia, a member of the 2018 PatientsLikeMe Team of Advisors who’s living with bipolar II disorder. Here’s what she had to say about parenting with a mental health condition, learning to adapt and how she “defies the odds.”

When I was younger I wrote stories about my alter ego who had kids. I lived almost vicariously through this alter, figuring I would never be a parent myself — that I was too damaged to be loved, much less be a parent. The resounding thud ending my hopes came when I was 20 and diagnosed primarily with bipolar II disorder, rapid cycling, during my first inpatient hospitalization. The relief of knowing what was going on with me was mixed with the fear and a sense of “no one is going to want to deal with this enough to love me.” I was wrong — I have an 11 ½ year old stepdaughter and a 3 ½ year old daughter.

To some extent they know that mom is “sick” and it doesn’t ever fully go away. It causes me to feel like I am not worthy of having kids or that they would be better off with anyone else as their mom. I worry constantly about the emotional damage I may be causing them because of my bipolar symptoms. That worry and my desire to do better for them, and myself, is a huge driving force to regain and maintain my stability.

When my husband and I were planning our family, I told him that:

“If our kid was like me, she would be in a great place full of love and understanding. Her family will know the battles they are about to face and how to face them.”

We will be as ready as we can be to help her. As a parent, that is all we can do — be there to help them through all of life — from learning to roll over, to walking, to homework, to heartbreaks and celebrations. Having a mental illness does not fully stop me from being there for them. I may not be as present and involved as I want, but I’m working on it, and the best part of kids is that they love you without hesitation.

My daughter is three, and she can be handful with her “three-nager” attitude that truly makes me fear puberty with her. She is also so incredibly compassionate, smart, funny, creative and loving that I’m in awe of her constantly. My stepdaughter is entering puberty and all of those joys and frustrations, but she is also: vibrant, headstrong, dynamic and an ever-evolving young woman. No matter what we face in the future, we are going to succeed because we are a family.

You can be an amazing parent with any type of illness; it does not define or exclude you from that. Every family has its own challenges and learning how to adapt and overcome your obstacles is vital to success.

Can you relate to Alysia’s story? Join PatientsLikeMe and connect with the 14,000+ members living with bipolar disorder.

 

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Pre-diagnosis limbo: “I knew something was wrong”

Posted March 16th, 2018 by

Before you were diagnosed with your condition, how long did you live in “limbo” with your symptoms and what was that like? Living with the unknown is a common part of the patient experience — PatientsLikeMe data shows that people with a wide range of health conditions live with their symptoms for several months or years before getting diagnosed.

Let’s take a look at the diagnosis “lag time” and some common first symptoms for various conditions, plus anecdotes and quotes about members’ earliest experiences with their condition (like this one from a member living with multiple sclerosis).

Diagnosis delay

The graph below shows how long it can take for people with various health conditions to receive their diagnosis. While it doesn’t represent every patient’s experience, it gives a sense of the hundreds — or in some cases, thousands — of days many people live with their symptom(s) before they get their diagnosis. (Click here for a larger view.)

* Median time between “first symptom” date and diagnosis date for members who’ve reported both on PatientsLikeMe, including (N=) 5,671 members with ALS; 12,870 with bipolar disorder; 40,846 with fibromyalgia; 430 with lung cancer; 7,918 with lupus (SLE); 14,929 with major depressive disorder; 30,262 with MS; 8,214 with Parkinson’s disease; 9,100 with PTSD; 6,979 with rheumatoid arthritis

Disruptive, elusive symptoms

“I knew something was wrong, just did not know what,” says one member with living with multiple sclerosis (MS) — a sentiment repeated in many forums.

What was your first symptom or hint that you had a health issue? When we ask members with certain conditions to recall their “first symptom noticed,” here’s a look at the three most commonly reported responses:

  • ALS – Slurred speech, foot drop, muscle twitching
  • Parkinson’s disease – Tremor in hands, tremor (unspecified), balance problems
  • MS – Fatigue, balance problems, numbness and tingling with pins and needles
  • Lupus (SLE) – Fatigue, muscle and joint pain, joint pain
  • Rheumatoid arthritis – Joint pain, muscle and joint pain, joint swelling
  • Fibromyalgia – Muscle and joint pain, fatigue, pain (unspecified)

Many health conditions have at least some similar or overlapping symptoms, which can confuse both doctors and patients. “It’s so weird because so many things feel like they may be something else,” one member noted in a forum discussion.

Members living with mental health conditions report a variety of symptoms. Looking at the graph above, many with mental health conditions appear to live with symptoms for three to five years or more before their diagnosis. Stigma surrounding mental health diagnosis and treatment could add to this delay and is a common topic discussed in the forums and in the medical community. Here’s just one comment from a member living with bipolar I disorder.

Years of “limbo”

Some conditions don’t have a standard diagnostic test or tool yet. Months or years without a proper diagnosis can be “hellish,” writes one member in the Parkinson’s disease forum, which launched a discussion that went something like this (can you relate?):

“My Doctors … and there were many …. misdiagnosed me for 10 lovely years! A hellish period…”

“It took 4 yrs in my case. The problem is no one seems to look at the person as a whole. The doctor’s are all specialists dividing the body into specialized ‘chunks.’ It’s hard to connect the dots this way…”

“It took over a year to be diagnosed. Then my family dr would not believe the diagnosis by the specialist and kept telling me that all the symptoms were all in my head and prescribing all the wrong stuff…”

“It took around 16 years to get diagnosed. Years of compiling a list of illnesses so long that even I started to think I was a hypochondriac…”

Many other communities have discussed their first symptoms and paths to diagnosis, including members with ALS, lupus, MS, and epilepsy.

How long was it before doctors correctly diagnosed your condition? Join PatientsLikeMe to connect with thousands of others who can relate.

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