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My Mother Was Hiding Chronic Illness

We’ve published several beautiful posts from Claudia Schmidt of MyLeftBreast.net about dealing with her diagnosis and treatment of breast cancer. What Claudia didn’t know until she was an adult about her mother’s hiding chronic illness. Can seeing one way of coping with a diagnosis help you deal with your own diagnosis in a different way?

I Thought My Mom Was Angry, But She Was Just Keeping Her Multiple Sclerosis Diagnosis a Secret 

When I was a young child, I always thought my mom was angry most of her life because she didn’t want us, wished she hadn’t had kids, didn’t like being a mom. Then, when she passed away 5 years ago, I had the chance to read some of her old journals (she made an entry every single day for most of her life) and began to understand that in actuality, she embraced motherhood and her kids with a huge amount of enthusiasm. In her early entries, she was giddily happy about having kids and a family, and wrote long entries about how wonderful it was to be a mother and how happy she was being married with kids.

It wasn’t until she was diagnosed with Multiple Sclerosis that my mom started to become the rather complicated woman that I knew growing up.

When he diagnosed her with Multiple Sclerosis in her mid 30s, my mom’s doctor told her that she must never gain weight, because one day the MS would cause her to become bed-ridden. He told her that the disease was progressive and that she would gradually lose the ability to care for herself, let alone care for her family.

What a horrible thing to have looming over you, especially when you had 4 young children all under the age of 10 to care for (my brother came along 5 years after I was born).

bottle-of-medication

 

And, my mother being the stoic that she was, decided then and there not to tell anyone.

Not my father, not her parents, not us, not her best friends.  No one.  She kept the diagnosis a secret for over 25 years. 

When she finally told me on my 31st birthday that she had something to tell me that she’d been hiding from all of us, including my dad, the very first thing I said to her after she told me about the MS was, “That’s why you wouldn’t go with us that day at The Cloisters in New York.” 

My mom was a big history and religious buff.  So, you can imagine my surprise and confusion the day our whole family went on a special visit to The Cloisters, when as we got out of the car, she proceeded to pull out her book (she was a big reader, and always had a book with her), sit herself on a nearby park bench and announce, “You all go on without me, I’m going to stay here and read my book.”

I was dumbstruck, and couldn’t figure out why she always seemed to withhold herself from us, and especially from something which she had seemed so excited about. I mean, this was the holy grail of family trips for the Schmidt family – religion, history, education and literature all rolled into one – and for no apparent reason, my mom was refusing to join in with the rest of us. 

At dinner that night so many years later, she nodded and said, “Claudia, I could never have made it up all those steps with my MS.” The disease made it very hard for her to walk for long distances, and stairs were always a big challenge. If you’ve been to NYC to see the very beautiful and historic Cloisters, you’ll know that there is a very windy, steep staircase up the side of the hill that they are poised upon.

My dad couldn’t find a parking spot up top, and so parked the car on the street down below, at the foot of the stairs. When my mom saw the staircase, instead of asking my dad to drive back up and drop her off at the door of the museum, she just sat herself down on a bench to read her book, rather than tell us the truth about having Multiple Sclerosis.

Such a small thing: if she’d only been able to ask for help, we would have jumped to support her. She had a hard, and lonely life, I think. We all would have loved to have been able to help her if she’d only been willing to share her “weakness,” which is what I think she considered it to be. 

My mom passed away 5 years ago. During this year, as I went through the various stages of my breast cancer journey, I would think about how glad I am that she’s not physically here to have to deal with this. If she were here in body, she would only feel helpless and unable to help me, since she couldn’t travel at the end of her life, and was in fact bed-ridden those last two years.

But since she’s not here in body, I believe that she’s able to see what’s actually going on, in spirit. I’m not a particularly religious person, although I consider myself to be very spiritual. My theory is that my mom can see and know what’s going on with me, in its totality, from where ever the heck she is in her current form. So, she can see all the physical difficulties I had this year but could also see my spirit and strength throughout, and has that sense of knowing that I’m able to handle it.

Mary Elizabeth McClafferty Schmidt was a strong woman. She raised 4 strong kids, and I’m proud to be one of them.

Read more from Claudia Schmidt on her blog, My Left Breast

Claudia Schmidt

Slightly obsessive-compulsive, self-employed mom with 2 very cool but snarky teenage kids who just happens to have been diagnosed with Stage 1 breast cancer in February of 2010. Looking at life through a new lens now.

Claudia Schmidt

Slightly obsessive-compulsive, self-employed mom with 2 very cool but snarky teenage kids who just happens to have been diagnosed with Stage 1 breast cancer in February of 2010. Looking at life through a new lens now.

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Cathy Chester

Wednesday 21st of May 2014

You get some of your inner strength from your mom, two women with difficult life-changing diagnoses. But you differ from your mom in choosing to write about your difficulties.

We all have choices, and the time in which her diagnosis occurred was a time where people mostly chose not to tell. She was a product of her time. And you are a product of yours.

Thank you for writing what must have been a difficult yet cathartic post. Thank you for sharing your life with us.

Claudia Schmidt

Thursday 22nd of May 2014

You're right, Cathy. I did get my inner strength from her. And, it must have been a huge burden for her to bear all those years. I'm glad she finally shared it all with us. She WAS a product of her times. I wish it had been easier for her, but in the end, we all have our own paths to walk and lives to live. Thanks for reading and commenting. Hugs.

Kit Minden

Wednesday 21st of May 2014

I went to the cloisters, too. Now, with MS, it would be impossible. I can understand hiding it but I can also understand sharing it and letting you not misunderstand her withdrawals. How very difficult for all of you. Times have changed, and we let others help us more than ever as we cope with illness, be it cancer or MS or any other. Glad you got to read those journals and know your mother on a different plane.

Claudia Schmidt

Thursday 22nd of May 2014

I think at that time of her life and during that era, women just didn't share details about their health. It was a different time. My mother really opened up to us when she got into her 50's and 60's and from them on we were all very aware of her health challenges. It would have made life a lot easier for her if she'd told us earlier, but I feel lucky that she told us at all, even though it was a lot later in life.

Karen

Wednesday 21st of May 2014

Claudia, that's amazing. I just cannot imagine. Any kind of secret can be toxic to a family, but withholding such vital information from those you love, who love you, must have caused untold heartache all round.

Claudia Schmidt

Wednesday 21st of May 2014

I know, right? I'm not sure it was the right thing to do, since her life was alot harder because she hid it all those years, and it certainly did cause a lot of heartache for all of us throughout the years. But at least she told us eventually. Families are complicated.

Lana

Wednesday 21st of May 2014

Thank you for sharing this story - it gave me chills! How hard it must have been for your mom to keep that secret, and how hard for her children who didn't understand her decisions at the time. What a treasure her journals must be.

Claudia Schmidt

Wednesday 21st of May 2014

I can only imagine how scared she must have been, all those years. I feel lucky that she finally told us when we were all older, as it allowed us to become very close when we got older.

Diane

Wednesday 21st of May 2014

Oh, I feel for your mom! Recently, I discovered something that had me medically worried. It turned out to be nothing. But the dilemma over whether I should tell my kids was a real nail-biter. On the one hand, I wanted their prayers. On the other, I didn't want to worry them until I knew it was something to worry about. I'm so happy to hear that she left you her journals of her life. Priceless!

Claudia Schmidt

Wednesday 21st of May 2014

Yes, we're very lucky to have her journals. Our kids will have our blogs, I suppose. For me, once I knew that the diagnosis was going to involve surgeries, chemo and loss of hair, my husband and I decided to share it with the kids but we were very careful in how to share the details so that we didn't frighten or overwhelm them. Hugs, glad your medical issue turned out to be nothing!

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