On April 21, Jane Meuke and her association organized a solidarity march to raise awareness of accessibility issues. Photo by Emmanuel Foudreau
“You’re hurting, but you have to succeed”. Jane Meuke repeated this phrase to herself many times throughout her life. After living in Venissier for ten years, this 41-year-old young woman: passionate about discovery “and has several diplomas, suffers from a number of chronic disabling pathologies: axial and peripheral ankylosing spondylitis, psoriatic arthritis and fibromyalgia.
For more than twenty years she lived in suffering, not knowing what ailments she was suffering from. ” I started having chronic pain when I was 10 years old.Jane explains. My neck and shoulders hurt, all small noises became unbearable. I had impressive hypersensitivity . “Despite medical examinations, no one can find the cause of his suffering. We talk to him about migraines and overwork. ” My family did not accept this diagnosis, they told me that it would go away on its own, and I believed it. So I grew up suffering because there was no room for speech. »
After graduating, she became a project manager in the field of business analytics. But the pain continues and begins to cover the whole body, then new symptoms appear. ” When I woke up this morning, it felt like a truck was crushing my joints.“However, she admits that she did not turn to a specialist to find out the cause of the discomfort, despite the persistent demands of the man who is now her husband: “Since there were no exams growing up, I thought I didn’t need them. I consulted doctors but did not report my experience. Deep work didn’t do me any good because I didn’t ask for it or talk about it.»
“I couldn’t walk anymore”
Therefore, she continues her life with her illnesses destroying her body. She becomes pregnant, and the suffering becomes even greater. “I couldn’t walk anymore, but I continued the pregnancy because I was told it was“It’s normal to feel pain.”Soon my second child was born, I changed gynecologist, and there he recognized my trouble.“But no diagnosis has been made.
Doctors then come regularly and give him injections to ease the pain at night. One day one of them suggested that Bekhterev had ankylosing spondylitis. Jane decides to do some research online to find out more. “Everything described was what I had, as if I wrote the article myself.» She then sees a rheumatologist, who confirms the diagnosis.
“My emotions were mixed. I was happy, but I didn’t know why, and I realized that I was relieved. This confirmed that I was not crazy and that I had a real illness and not a minor one. This is a chronic inflammatory pathology that is progressive because it is degenerative in nature. It affects my joints: sacroiliac bones, spine, and can also affect the periphery, such as the arms and legs.»
Photo by Emmanuel Foudreau
His other two ailments gradually began to develop, and as if this were not enough, he developed hypersensitivity to drugs due to an allergy to the treatment prescribed to him for ankylosing spondylitis. Since then, she still doesn’t have a recipe that suits her: “Even today my treatments may change because I can’t stand them.“All these trials hit Jane Meuka hard. “I’ve often wondered“What kind of life is this? I always have something, no one knows what it is, no one frees me.”I fell mentally. Then I told myself that we can take some positive aspects out of all this, make it a strength.»
Family history
Thanks to her belligerence and the support of her children and husband, she managed to get back on track. In 2023, they together created the Actionvisible & Handicap association. “We wanted to do something related to my past and my illnesses.» The goal is to raise awareness of invisible disabilities and encourage kindness and inclusion. “Information must be accessible. There are many solutions, but they remain little known.» Thanks to her experience in information technology, Jane created The Violet Pages, a database that brings together all technological innovations and alternative non-drug treatments. The association has 40 active members and about a hundred volunteers involved in all its activities.
In addition to Actionvisible & Handicap, Jane has recently returned to study with the aim of completing a university degree in Fundamental Rights and Disability Inclusion. His dissertation focused on disabled motherhood, another issue that is particularly close to his heart. “We are talking about adults or children with disabilities, parents of children with disabilities, but never about parents with disabilities. After everything I had been through, I told myself that I needed to talk about it.»
There is very little information on this issue. So, to help parents in the same situation as herself, Jane decided to create Handiparentalité 69, a collective that allows you to find a place to share experiences and rebuild your confidence. “I can’t take care of my children, I depend mainly on my husband, it’s very psychologically difficult. Sometimes we wonder why we have children, whether we can take care of them, what we will pass on to them.»
“The 2005 law concerns the inclusion of people with disabilities.she continues.We have the right to life, to parenthood, but we cannot be helped to realize it with all the ensuing consequences.» A Support Service for Parents for People with Disabilities (SAPPH) was created in 2021, but has not yet been rolled out throughout France. “This is progress, but it is still very recent.– Jane remarks.It will take a long time for the situation to develop.»
More information about the various promotions of the association can be found on the website.
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