Being diagnosed with tuberous sclerosis complex (TSC) can cause significant challenges within the life of the individual regardless of when first diagnosed. It is essential to understand acknowledging that life is different can be difficult for some while for others it might seem relieving to finally have a “name” to the issues they’ve experienced for several years.
It is completely valid and okay to have mixed emotions and process the reality that everyone’s “normal” is no longer the same. Another important factor to consider is that despite the wide range of neurocognitive abilities for those with TSC, discrimination can appear different as the individual gets older. The emotional challenges can be just as debilitating as physical challenges and significantly trigger ineffective coping mechanisms, stress, and anxiety.